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Research
Quality of life, support and smoking in advanced lung cancer patients: a qualitative study C Rowland,1 S J Danson,2 R Rowe,3 H Merrick,4 P J Woll,2 M Q Hatton,5 J Wadsley,5 S Ellis,2 C Crabtree,2 J M Horsman,2 C Eiser3
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Manchester Centre for Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK 2 Academic Unit of Clinical Oncology, University of Sheffield, Weston Park Hospital, Sheffield, UK 3 Department of Psychology, University of Sheffield, Sheffield, UK 4 Institute of Health and Society, Newcastle University, Newcastle, UK 5 Department of Clinical Oncology, Weston Park Hospital, Sheffield, UK Correspondence to Dr Christine Rowland, Manchester Centre for Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, M13 9PL, UK; christine.rowland@ manchester.ac.uk Preliminary analysis from this work was presented at: the European Health Psychology Society Annual Conference, Prague, 21–15 August 2012; UK Society for Behavioural Medicine Annual Meeting, Manchester, 10–11 December 2012 Received 23 September 2013 Revised 22 March 2014 Accepted 8 April 2014
To cite: Rowland C, Danson SJ, Rowe R, et al. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare2013-000589
ABSTRACT Background Lung cancer is the most common cancer and smoking is the principal cause. Due to poor survival rates, symptom palliation and promotion of health-related quality of life (HRQoL) are primary outcomes for lung cancer patients. Given the established relationship between smoking and lung cancer, patients who have smoked may feel stigmatised or guilty after diagnosis, and more pessimistic about their illness and likely outcomes. This may have adverse implications for HRQoL. Objectives We explored HRQoL and support experiences among newly diagnosed patients with advanced lung cancer. Design Semistructured interviews were conducted with nine patients and analysed using interpretative phenomenological analysis. Results Patients described the physical, emotional and social impact of disease on HRQoL. Fear of compromising their immune system and adjusting to new relationship roles had a wide-ranging effect on patients’ HRQoL. Patients acknowledged links between lung cancer and smoking but some continued to smoke. They were sensitive to the opinions of medical staff about smoking especially those who continued to smoke or recently quit. Conclusions We conclude that staff should give clearer advice about the adverse implications of continued smoking. We discuss the potential value of diagnosis as a teachable moment for promoting smoking cessation among patients and family members.
INTRODUCTION Lung cancer is the most frequently diagnosed cancer and the commonest cause of cancer death.1 It is well established that smoking is the primary cause.2 Diagnosis of lung cancer is often made when the disease is already at an advanced stage, with adverse implications for survival. In
Rowland C, et al. BMJ Supportive & Palliative Care 2014;0:1–8. doi:10.1136/bmjspcare-2013-000589
the UK, 5-year survival is just 9%.3 Therefore, treatment is often palliative in nature, and focused on managing symptoms and promoting health-related quality of life (HRQoL). Associations between continued smoking and poorer HRQoL have been demonstrated among a number of patient groups (head and neck cancers,4 chronic obstructive pulmonary disorder,5 asthma6). Although smoking cessation might be expected to improve HRQoL in lung cancer patients, research is limited7 8 or highlights physical symptoms reported in terms of HRQoL.9 There is, to date, little definitive evidence regarding an association between smoking and HRQoL10 11 and research has often focused on long-term survivors of lung cancer.10 Given the importance of HRQoL to lung cancer patients who face a heavy symptom burden and limited survival, it is vital to understand the factors that can compromise HRQoL in the months following diagnosis. Qualitative techniques are particularly useful in situations, such as this, where there has been little or no previous research.12 Adopting a qualitative approach allows researchers to understand key issues and refine questions and variables of interest for further study.12 The aims of this study were therefore to explore patients’ perceptions of their quality of life, taking into account their views about smoking.
METHOD Sample and recruitment
Adult patients with a pathologically confirmed diagnosis of advanced stage lung cancer and estimated survival greater than 6 months were included. Exclusion criteria were patients with limited English, severe 1
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Research Table 1 Outline of interview schedule Topic
Questions
Background Quality of life
Can you tell me what a typical day is like for you? Have you heard the term quality of life before? What does it mean to you? Tell me about your current quality of life Can you tell me about how much you are able to do physically? Can you tell me about your social life? Do you see friends and family as much as you would like? What do you do to relax? Do you worry about your illness? Are you currently employed? How do you find remembering and learning new things? How do you feel about any changes that have happened? Has anything in particular helped or hindered your coping? How regularly do you see medical staff? How do you feel about that? Regarding treatment, would you have done things differently knowing what you now know? Would you say your illness has changed you as a person?
Physical activity Social and family life
Cognition
General coping Treatments and hospital
General General prompts for all topics
Do you feel that changes are due to general ageing or your illness? How have you come to terms with changes? Overall do you think your idea of what is a good [insert topic] is different to what it was before your illness?
comorbid conditions or psychiatric disorder. Patients were recruited from the North Trent Cancer Research Network using a purposive, maximum variation sampling strategy. Interviews were conducted with nine lung cancer patients and interviewing ceased when theoretical saturation was achieved.
Medical and demographic data
Demographics, diagnosis, performance status13 and treatment were obtained from hospital records. Two patients quit smoking around the time they were diagnosed and three continued to smoke. The remainder quit smoking many years before diagnosis (10–40 years previously), two in response to health problems.
Procedure
Ethical approval was obtained from the NHS National Research Ethics Committee: Yorkshire and The Humber—Sheffield (REC reference: 08/H1308/243). Eligible patients were approached by a researcher during a routine oncology outpatient appointment. They were offered an information sheet and later contacted by telephone to arrange interviews (mean 42 days, range 9–118). Signed informed consent was obtained at the interview. Patients completed a single semistructured interview that took place at their home or the University of Sheffield between July 2010 and February 2011. In order to minimise bias during analysis, a reflective account of the research process was kept by the interviewer (CR). Interview schedule
The interview was structured to explore the following areas: typical daily activities; quality of life, physical activity; social and family life; cognition and general coping; and general comments (table 1). Prompts and further questions were guided by individual responses to ensure that the views expressed were not influenced unduly by the interviewer. Interviews lasted about 1 h (mean 53 min). 2
Analysis
Interviews were audio-taped and transcribed verbatim (maintaining anonymity). Data were analysed using interpretative phenomenological analysis (IPA) following published guidelines.14 IPA is a data-driven analytical technique widely applied in health and clinical psychology. Themes common across interviews are identified from within the data itself and related post hoc to the existing literature. All transcripts were coded independently by two authors (CR and HM). Inter-rater reliability was high (96% agreement). Differences were discussed and consensus reached without consulting a third person. Emerging themes were discussed with the wider research group to ensure credibility. Data were held securely on Microsoft Word documents and codes were annotated by hand on copies of transcripts. RESULTS Demographic and medical characteristics are shown in table 2. Five super-ordinate themes were identified: (1) effects of illness on quality of life, (2) family support (3) coping strategies, (4) medical support and
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Research Table 2
Demographic and medical profile of participants (n=9)
Characteristic
n
Sex 6 Males 3 Females Age (years) Range 57–73 Mean 66 Diagnosis 7 NSCLC 2 SCLC Performance status (PS) 2 PS-0 7 PS-1 Treatments Chemotherapy 7 Yes 2 No Radiotherapy 4 Yes 5 No Time since diagnosis (weeks) Range 8–24 Mean 14 Smoking status 6 Quit 3 Current NSCLC, non-small cell lung cancer; SCLC, small cell lung cancer.
(5) smoking. Examples of comments supporting each theme are presented in tables 3–7.
Effects of illness on quality of life
When asked directly about their quality of life, many explained that it was related to the extent to which they could achieve physical tasks (table 3). For some, this represented a series of limitations and focused on what they could no longer do. Others were more positive and pleased to be able to achieve as much as they did given their physical limitations. They had adjusted their expectations to match their physical ability. However, life with cancer affected daily activities and became organised around appointments and anticipated treatment side-effects, so that an entire day could be organised around one hospital appointment. During chemotherapy most tried to avoid social situations, and limit contact with friends and family rather than risk compromise their own immunity. This could be difficult when patients had to cancel visits with children and grandchildren who were experiencing minor illnesses. One patient was so fearful about leaving home they showed symptoms of anxiety and depression.
HRQoL was also compromised across a range of areas as demonstrated in the remaining super-ordinate themes. Family support
Almost all patients described plenty of support from many sources, including partners, family, friends and medical staff (table 4). Most had received positive reactions from others but some identified a general social stigma associated with cancer. There were instances where friends and acquaintances kept a distance, causing distress and feelings of isolation. The impact of diagnosis had a substantial effect on relationships as patients and partners adapted to changing routines and assumed new roles. Couples struggled to achieve a balance between retaining independence and accepting assistance. Frustrations could be directed at partners, particularly as physical abilities declined. Many were concerned about the lack of support for their partners. It could be difficult for partners to access respite and support of practical benefit, with adverse implications for physical health and mental well-being. Concern for partners’ well-being often resulted in patients withholding information about physical limitations so as not to burden their partners further. However, this strategy could increase stress and anxiety within the relationship. Couples who openly discussed symptoms and concerns appeared better at coping and managing the changing dynamics of their relationship compared with those who withheld information from the partner. Coping strategies
A range of different coping strategies was reported. Some were very practical, such as adapting routines, changing expectations of physical capability, and focusing on hobbies and interests (table 5). Other strategies involved maintaining a positive attitude and focusing on the future. The effectiveness of focusing on the future differed depending on the perspective
Table 3 Examples of comments for theme: ‘Effects of illness and quality of life’ (patient reference number in parentheses) Secondary theme
Comments
Overall evaluation Adjustments
Quality of life for me is the independence both physically and mentally to do what I want (9) Getting the best out of life that you can. Making the, making everything worthwhile really…It’s acceptance of how things are at the moment (4) The only time I’m going out is to the hospital, you know? So I’ve got all these nice clothes upstairs and the only time I get dressed up is to go to the hospital (5) You know it’s like a big balloon in middle of day where I’ve got to go and I’m only there for quarter of an hour (1) If any of babies have got colds or anything like that they keep away (3) I had the grandson to stay once a fortnight … I’ve just not been able to have him come and stay and I really miss him… …would have to cancel and that upsets me. I don’t like to do that to people when they’re expecting me. And if I’ve been looking forward to it as well I don’t want to not do it (9) It’s depressing you know. I’ve never been used to staying in the house. I feel like I’m confined to barracks, you know? I suppose in some respects it’s my choice because I’m a bit paranoid about getting an infection … I just don’t want to get an infection you see? That’s why I stay in (5)
Comparing with life before diagnosis Appointments Cancelling
Fear, anxiety and depression
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Research Table 4 Examples of comments for theme: ‘Family support’ (patient reference number in parentheses) Secondary theme
Comments
Cancer stigma
Positive— …lots of friends have stepped up their contact. …I mean you can’t fault them. They jump in and control the situation so there’s no chance of us [pause] if you like falling out of the net. No. No way (6) Negative—I haven’t seen any of the others. They’ll phone me up now and again and I’ll get the odd text message but they’re a bit wary to come and see me which is strange isn’t it because ’cause you’ve got cancer doesn’t make you a different person, does it? (5) I think with my daughter if I need help I’ve to say so you know. She’s one of those sort of people. If I say so then she’s there. But I’ve always been sort of an independent Mum…you have to be self-reliant don’t you and I can’t accept that I’m not totally in control anymore… …and I keep being told that I’ve not to worry about it or you know these things are not important but they are (4) We’ve had the odd row…because it’s easy to become [pause] not institutionalised [pause] but to expect people to start doing things for you… (9) What can she do if I tell I’ve got a bad back or anything? She can’t do nothing. Nothing at all. So there’s things I don’t always tell her. And that’s when she gets mad (2) If anything I’m worried about it’s her because she will not ask for help. That’s difficult. And how you persuade her to ask for help and how you persuade her to ask for somebody to talk to I don’t know (6)
Change of roles
Communication Concern for partner’s needs
taken. Those who were anxious and worried about how their death might affect their partner and family became visibly distressed during the interview. However, when the future was contextualised in terms of hobbies, interests and future ambitions, there was a sense of hope and optimism that became a strategy for coping with the unknown element of disease progression. Many spoke of a time when ‘things would go back to normal’ rather than acknowledge that this was unlikely. A general underlying concern stemmed from not understanding the illness completely or reasons for particular treatments. Three patients felt they would cope better if they could access more information. Although hospital doctors were seen as approachable and willing to address concerns, patients did not always feel able to elicit the information they required. They acknowledged that sometimes this was because they did not ask the right questions or know what to ask. One patient was frustrated at not being able to access the depth of information wanted, and suggested that doctors should tailor their responses depending on individual interest.
broken in an unsympathetic manner. Others had experienced a prolonged period of illness before they were referred to hospital and were often left with residual feelings of shock and anger that made it harder to accept the diagnosis. Most patients had met a Clinical Nurse Specialist and were given a point of contact for queries. A small number were reluctant to contact palliative care nurses as they perceived this type of help to be suitable for end-of-life care rather than helpful in the day-to-day practicalities of dealing with illness and treatment symptoms. However, hospital staff were generally regarded very positively and this helped to make it easy to accept treatment advice. Two patients who had recently quit smoking argued that they had a moral duty not to smoke in order to assist the medical teams in their treatment efforts. Staff attitudes around smoking appeared to be associated with patients’ smoking choices. There was a belief among those who had recently quit that medical staff would feel a personal slight when patients smoked. However, staff were reported to assure patients that this was not the case.
Medical support
Smoking
The manner in which the diagnosis was handled had a substantial impact on emotional adjustment (table 6). Some felt that news of their diagnosis had been
Patients did not necessarily believe that smoking contributed to their lung cancer, although those who quit on diagnosis were sure that smoking was to blame
Table 5 Examples of comments for theme: ‘Coping strategies’ (participant reference number in parentheses) Secondary theme
Comments
Family Future orientation
But I worry if anything happened to me would they be able to cope. I worry about the pressure its put on [wife] all the time. (2) If I could get back to what I were [pause] well basically I know I’m never going to be same but if I can get back to [pause] I was doing pretty good… (1) ’Cause you know as soon as I’ve got the all clear I shall book a cruise. I’m even thinking about buying a new static caravan next year… (5) I think the medical staff have a very difficult line to walk on in how they keep their patient informed and what they done and I appreciate they work on what I would look at as a common denominator and they work on that. What they’ve got to sometimes do is to realise that the patient may want to know a bit more and they’ve got to know how to pass that over (6)
Information from medical staff
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Research Table 6 Examples of comments for theme: ‘Medical support’ (participant reference number in parentheses) Secondary themes
Comments
Diagnosis
… what I am still very, very angry about and that is the amount of time it took for our GPs to actually do something. … And I’d so much faith in the doctors but unfortunately I don’t anymore (7) ‘But as I say I could murder a cigarette now but it’s just [pause] be just futile. Waste of all them people’s time that’s tried to save my life’ (1) ‘Not when you see the amount of work that these nurses and doctors put in to try to help you, you know? And for them to turn around [pause] they’re just abusing it. I think it’s terrible’ (2) I saw them there at [the hospital]. But they are there they say if you want them to come out. Maybe when things get a little bit worse I will (7) …I says you must be absolutely disgusted in that? She says no if they want to do that we allow them to do it. It’s for their quality of life. They feel better doing that (2)
Supporting medical team by not smoking
Nursing support Views of medical staff and smoking GP, general practitioner.
(table 7). Others speculated that environmental pollutants or chance could be responsible, with only longer-term quitters acknowledging that smoking could also be the cause. Some patients perceived a stigma of smoking but did not feel that they experienced negative effects themselves. Others were keenly aware of stigma. There was resentment about antismoking legislation and a sense that the risks of smoking were inflated. It appeared that this stance was used to rationalise continued smoking. Some patients struggled to quit or reduce their smoking. Those who had recently quit were tempted to smoke but observed they experienced fewer treatment side-effects than those who continued to smoke. This difference was attributed to smoking cessation and provided encouragement not to smoke. Those who continued to smoke justified it in terms of stress relief and argued it was more sensible to give up smoking after treatments were completed to avoid additional stress associated with quitting. At times, medical staff were perceived to endorse these rationalised decisions to continue smoking, allowing patients to feel justified in their reasoning.
DISCUSSION The aims of this research were to explore patients’ perceptions of quality of life taking into account their views on smoking. Our results provide insight into the impact of lung cancer on patients’ HRQoL and the support they receive from family and medical staff. There are implications both for measurement of HRQoL and smoking cessation interventions. Quality of life
HRQoL is a complex evaluation of emotional, social and physical well-being that has an impact on the patients’ functioning. We found that there were many challenges to achieve an adequate social and family life. The lives of patients and their families can become organised around clinic appointments with adverse implications for daily routines and enjoyment of hobbies or social activities. As physical activity became restricted, roles and relationships changed, negatively affecting family relationships. These results follow similar findings from the USA documenting the content of early palliative care interventions with advanced lung cancer patients.15 Topics discussed by patients were not limited to symptom management
Table 7 Examples of comments for theme: ‘Smoking’ (participant reference number in parentheses) Secondary theme
Comments
Causes of cancer
Everybody’s got to think that, why me? But I mean I realise why me, because I was smoking (1—quit smoking) I think it’s just one of them things. ’Cause me, I think everybody’s got a bit of cancer in them somewhere down the line and it just takes something to break it off doesn’t it? Something to set it off (8—continued smoking) It’s too much pushing. This country shouldn’t [pause] I mean you go to France you can smoke anywhere. Go to Holland you can smoke anywhere. There’s only this country that’s pushed this as far as it has and it’s making smokers [pause] they’re restricting smokers and they’re making them feel uncomfortable and I don’t think it’s right. …when you stop smoking… that’s when you pick things up that you wouldn’t normally have picked up. … to me this passive smoking and antismoking campaign I think it’s just gone over top myself. …I don’t believe that smoking causes cancer and I don’t believe in passive smoking… (3) I actually got two friends… Both got lung cancer both still smoking and both very poorly. One’s bad one week, one’s bad another week. Interviewer: And do you think they’re more poorly because they’re carrying on smoking? Oh yeah, definitely. Yeah (2) In fact we were talking to one nurse while I was having my chemo and she accepted the fact that we smoked and she accepted the fact that we shouldn’t try and cut it down because the stress is too much (3)
Social stigma
Symptoms related to smoking
Endorsement of smoking
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Research but included coping, emotional status, relationship and rapport building, and engaging family members.15 These findings further support the conceptualisation that HRQoL is more than performance status or related only to symptoms, and have important implications for choice of HRQoL assessment instruments. The European Organization for Research and Treatment of Cancer (EORTC) QLQ C3016 together with the LC13 lung cancer module17 and Functional Assessment of Cancer-Therapy - Lung (FACT-L)18 are widely used cancer-specific questionnaires which use a multidimensional concept of HRQoL. While this emphasis on the multidimensionality of HRQoL is to be commended, our findings suggest that the social domain in such questionnaires may not tap the full range of issues patients describe. Social functioning assessed by the EORTC considers whether disease interferes directly with usual social engagements.16 The FACT-L emphasises relationships and support but not disruptions to social activity.18 The FACT-L includes a question regarding regrets about smoking but ultimately neither FACT-L nor the EORTC addresses the potential impact of cancer-related stigma. Our interviews suggest that social functioning may be affected at a wider level than amount of social engagement and is not confined exclusively to support from a social network. Perceived stigma surrounding lung cancer or perceived disparity in physiological response to treatments between smokers and nonsmokers may also impact on HRQoL. Thus, future HRQoL research with lung cancer patients should incorporate a multidimensional assessment of HRQoL and consider including additional items that assess a wider concept of social functioning. Support
Patients described support received from healthcare professions, as well as partners, family and friends. There were both positive and negative aspects to support from healthcare professionals. Some were critical of the general practitioners’ management of diagnosis. Mistrust of clinical staff has previously been associated with treatment refusal.19 However, hospital specialists were regarded very positively by those in this study, making it easy for them to accept treatment advice. Some patients did not feel their information needs were met, with potentially adverse consequences. It has been shown that 61% of lung cancer patients require more information and that nonprovision is associated with poorer psychological and physical outcomes20 and treatment refusal.19 A small number viewed support from palliative care nurses as not appropriate or necessary because they believed these services were needed for end-of-life care, and did not meet their current needs. Being given information about such additional services has previously been related to more negative illness perceptions 6
including more consequences, longer timeline, less treatment control, more symptoms, less understanding of the illness and a stronger emotional response.21 However, HRQoL is improved when palliative care is introduced early.22 The role of the partner and wider support systems were an essential part of adaptation to disease and facilitating good HRQoL. However, there were negative consequences when patients shielded family members from the impact of illness. This process, of ‘protective buffering’ is widely reported in the coping and social support literature and is associated with psychological distress among patients and partners.23 24 Further research exploring the role of partner communication of cancer-related issues on adjustment and HRQoL could inform family-based interventions and improve support for newly diagnosed cancer patients. Smoking
Although all patients acknowledged the link between smoking and lung cancer, some denied that their own smoking contributed to their illness. Similar findings have been reported elsewhere.25 26 Some who acknowledged smoking as a cause of their illness quit smoking and believed that medical staff might think negatively of others who smoke postdiagnosis. Patients with lung cancer may feel guilty if they have smoked or stigmatised due to the diseases association with smoking.27 28 Patients who feel that they are blamed for their illness may feel they receive less support from others which may lead to a more pessimistic view of their illness and outcomes. It is important to consider that decisions around smoking appeared to be associated with patients’ opinions about the views of medical staff. Salander26 speculated that to minimise the strain associated with the cognitive incongruence of smoking and lung cancer, patients may interpret comments from clinicians in a way that minimises the harm of smoking. It is also possible that staff may not wish to encourage smoking cessation for fear of appearing to stigmatise patients. Ultimately, this lack of clear communication between patients and staff may jeopardise effective delivery and acceptance of treatment advice, having adverse implications for HRQoL. There is recent evidence that patients, and partners, will accept lifestyle advice about behaviours associated with their disease.29 Gritz et al30 highlighted the important role of clinical staff in promoting smoking cessation among cancer patients. Thus, it might be that diagnosis presents an opportunity for a ‘teachable moment’.31 Given the willingness of the patients we interviewed to accept clinician recommendations, it is possible that similar patients could be amenable to smoking cessation advice if delivered clearly and within the context of treatment options. Furthermore, we suggest that smoking cessation interventions may be acceptable to both patients and
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Research family members at the time of diagnosis. We have added to previous literature25 32 describing the importance of family dynamics for patient well-being and perhaps, ultimately, smoking behaviours. Bastian et al33 also found that white patients with late stage disease were most likely to promote a smoking cessation intervention among friends and family: a profile matching that of the patients interviewed in this study. Strengths and limitations
This study used a qualitative method to bring a depth of understanding to the under-researched area of HRQoL and smoking in lung cancer patients and their partners. As with other qualitative work, it is not possible to make generalisations to the wider population. However, it is possible to make inferences from findings and explore these in the context of existing literature or via testable hypotheses. All qualitative work is potentially at risk from the biases of the researcher. In order to minimise this risk, the researcher kept a reflexive diary and transcripts were independently coded by a second researcher. Credibility of findings was assessed through peer review from the wider research team and coherence of the narrative was considered. Clinical implications
These findings indicate the extent to which patients’ overall well-being can be affected by lung cancer diagnosis and how these effects go beyond physiological impact alone. Clinical staff should consider indices beyond physical status when considering their patients’ HRQoL. Patients described an important role for family in maintaining their HRQoL, suggesting that clinic staff could explore ways to support family members during the adjustment period postdiagnosis and involve them in palliative care planning. Finally, many patients wanted to work with staff to help combat their disease. It was clear that patients were sensitive to staff attitudes about smoking which may affect smoking choices. Therefore, staff working with lung cancer patients may need to deliver clear and consistent messages about the potential risks of continued smoking to both physiological and psychological well-being if they wish to successfully promote smoking cessation. Further, staff may be able to use diagnosis as a time to engage with patients and family members about their smoking behaviours. CONCLUSIONS This study explored the relationship among HRQoL, support and smoking among patients with advanced lung cancer. For patients in this study, HRQoL was not limited to physical activity, but reflected aspects of a multidimensional construct previously described. The implications of lung cancer extend beyond the physical symptoms to incorporate a range of domains.
Refinements to current measures should give greater acknowledgement to the social and family implications of the disease. In this study, family relationships were essential in managing the disease and clinic staff should consider including family members in care planning. Finally, patients value the opinions of medical staff and with clear and consistent messages this could be used to promote smoking cessation among patients and their families. Acknowledgements We are grateful to Sheffield Hospitals Charitable Trust who funded this work (Grant Number 080904). We also acknowledge the contribution of Tracey Short. We most sincerely thank all the patients who took part in this study. We thank all the staff involved at Weston Park Hospital and Royal Hallamshire Hospital, Sheffield, and Doncaster Royal Infirmary, Doncaster. Collaborators None. Contributors CE, SJD, RR, PJW, MQH and JW were responsible for the conception and design of the study. SE, CC, JMH and CR collected the data, which were analysed by CR and HM. Data were interpreted by CR, HM and CE and confirmed by all authors. All authors were involved in drafting and critically appraising the manuscript before providing final approval. Funding This work was funded by Sheffield Hospitals Charitable Trust (grant number: 080904). The funder remained separate to the research process and development of this submission. Disclaimer The views expressed in this publication are those of the authors and have not been influenced by the funding body. Competing interests None. Patient content Data has been removed from these case descriptions to ensure anonymity. Ethics approval NHS NRES Committee: Yorkshire and The Humber—Sheffield. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement No additional data available.
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Research 10 Rowland C, Eiser C, Rowe R, et al. The effect of smoking on health-related quality of life in lung cancer patients: a systematic review. BMJ Support Palliat Care 2012;2:312–18. 11 Poghosyan H, Sheldon LK, Leveille SG, et al. Health-related quality of life after surgical treatment in patients with non-small cell lung cancer: a systematic review. Lung Cancer 2013;81:11–26. 12 Sofaer S. Qualitative methods: what are they and why use them? Health Serv Res 1999;34:1101–18. 13 Oken MM, Creech RH, Tormey DC, et al. Toxicity and response criteria of the eastern-cooperative-oncology-group. Am J Clin Oncol 1982;5:649–55. 14 Smith JA, Larkin M, Flowers P. Interpretative phenomenological analysis: theory, method and research. London: Sage Publications, 2009. 15 Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer a qualitative study. JAMA Intern Med 2013;173:283–90. 16 Aaronson NK, Ahmedzai S, Bergman B, et al. The Europeanorganization-for-research-and-treatment-of-cancer QLQ-C30—a quality-of-life instrument for use in international clinical-trials in oncology. J Natl Cancer Inst 1993;85:365–76. 17 Bergman B, Aaronson NK, Ahmedzai S, et al. The EORTC QLQ-LC13—a modular supplement to the EORTC core quality-of-life questionnaire (QLQ-C30) for use in lung-cancer clinical-trials. Eur J Cancer 1994;30:635–42. 18 Cella DF, Bonomi AE, Lloyd SR, et al. Reliability and validity of the Functional Assessment of Cancer-Therapy—Lung (FACT-L) quality-of-life instrument. Lung Cancer 1995;12:199–220. 19 Sharf BF, Stelljes LA, Gordon HS. ‘A little bitty spot and I’m a big man’: Patients’ perspectives on refusing diagnosis or treatment for lung cancer. Psychooncology 2005;14:636–46. 20 Sanders SL, Bantum EO, Owen JE, et al. Supportive care needs in patients with lung cancer. Psychooncology 2010;19:480–89. 21 Husson O, Thong MSY, Mols F, et al. Illness perceptions in cancer survivors: what is the role of information provision? Psychooncology 2013;22:490–98.
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22 Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–42. 23 Langer SL, Rudd ME, Syrjala KL. Protective buffering and emotional desynchrony among spousal caregivers of cancer patients. Health Psychol 2007;26:635–43. 24 Manne S, Badr H. Intimacy processes and psychological distress among couples coping with head and neck or lung cancers. Psychooncology 2010;19:941–54. 25 Robinson CA, Bottorff JL, Smith ML, et al. ‘Just because you’ve got lung cancer doesn’t mean i will’: lung cancer, smoking, and family dynamics. J Fam Nurs 2010;16:282–301. 26 Salander P. Attributions of lung cancer: my own illness is hardly caused by smoking. Psychooncology 2007;16:587–92. 27 Else-Quest NM, LoConte NK, Schiller JH, et al. Perceived stigma, self-blame, and adjustment among lung, breast and prostate cancer patients. Psychol Health 2009;24:949–64. 28 LoConte NK, Else-Quest NA, Eickhoff J, et al. Assessment of guilt and shame in patients with non-small-cell lung cancer compared with patients with breast and prostate cancer. Clin Lung Cancer 2008;9:171–78. 29 Williams K, Beeken RJ, Wardle J. Health behaviour advice to cancer patients: the perspective of social network members. Br J Cancer 2013;108:831–35. 30 Gritz ER, Fingeret MC, Vidrine DJ, et al. Successes and failures of the teachable moment—smoking cessation in cancer patients. Cancer 2006;106:17–27. 31 McBride CM, Emmons KM, Lipkus IM. Understanding the potential of teachable moments: the case of smoking cessation. Health Educ Res 2003;18:156–70. 32 Weaver KE, Rowland JH, Augustson E, et al. Smoking concordance in lung and colorectal cancer patient-caregiver dyads and quality of life. Cancer Epidemiol Biomarkers Prev 2011;20:239–48. 33 Bastian LA, Fish LJ, Peterson BL, et al. Proactive recruitment of cancer patients’ social networks into a smoking cessation trial. Contemp Clin Trials 2011;32:498–504.
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Quality of life, support and smoking in advanced lung cancer patients: a qualitative study C Rowland, S J Danson, R Rowe, H Merrick, P J Woll, M Q Hatton, J Wadsley, S Ellis, C Crabtree, J M Horsman and C Eiser BMJ Support Palliat Care published online April 30, 2014
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Research
Quality of life, support and smoking in advanced lung cancer patients: a qualitative study C Rowland,1 S J Danson,2 R Rowe,3 H Merrick,4 P J Woll,2 M Q Hatton,5 J Wadsley,5 S Ellis,2 C Crabtree,2 J M Horsman,2 C Eiser3
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Manchester Centre for Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, UK 2 Academic Unit of Clinical Oncology, University of Sheffield, Weston Park Hospital, Sheffield, UK 3 Department of Psychology, University of Sheffield, Sheffield, UK 4 Institute of Health and Society, Newcastle University, Newcastle, UK 5 Department of Clinical Oncology, Weston Park Hospital, Sheffield, UK Correspondence to Dr Christine Rowland, Manchester Centre for Health Psychology, School of Psychological Sciences, University of Manchester, Manchester, M13 9PL, UK; christine.rowland@ manchester.ac.uk Preliminary analysis from this work was presented at: the European Health Psychology Society Annual Conference, Prague, 21–15 August 2012; UK Society for Behavioural Medicine Annual Meeting, Manchester, 10–11 December 2012 Received 23 September 2013 Revised 22 March 2014 Accepted 8 April 2014
To cite: Rowland C, Danson SJ, Rowe R, et al. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare2013-000589
ABSTRACT Background Lung cancer is the most common cancer and smoking is the principal cause. Due to poor survival rates, symptom palliation and promotion of health-related quality of life (HRQoL) are primary outcomes for lung cancer patients. Given the established relationship between smoking and lung cancer, patients who have smoked may feel stigmatised or guilty after diagnosis, and more pessimistic about their illness and likely outcomes. This may have adverse implications for HRQoL. Objectives We explored HRQoL and support experiences among newly diagnosed patients with advanced lung cancer. Design Semistructured interviews were conducted with nine patients and analysed using interpretative phenomenological analysis. Results Patients described the physical, emotional and social impact of disease on HRQoL. Fear of compromising their immune system and adjusting to new relationship roles had a wide-ranging effect on patients’ HRQoL. Patients acknowledged links between lung cancer and smoking but some continued to smoke. They were sensitive to the opinions of medical staff about smoking especially those who continued to smoke or recently quit. Conclusions We conclude that staff should give clearer advice about the adverse implications of continued smoking. We discuss the potential value of diagnosis as a teachable moment for promoting smoking cessation among patients and family members.
INTRODUCTION Lung cancer is the most frequently diagnosed cancer and the commonest cause of cancer death.1 It is well established that smoking is the primary cause.2 Diagnosis of lung cancer is often made when the disease is already at an advanced stage, with adverse implications for survival. In
Rowland C, et al. BMJ Supportive & Palliative Care 2014;0:1–8. doi:10.1136/bmjspcare-2013-000589
the UK, 5-year survival is just 9%.3 Therefore, treatment is often palliative in nature, and focused on managing symptoms and promoting health-related quality of life (HRQoL). Associations between continued smoking and poorer HRQoL have been demonstrated among a number of patient groups (head and neck cancers,4 chronic obstructive pulmonary disorder,5 asthma6). Although smoking cessation might be expected to improve HRQoL in lung cancer patients, research is limited7 8 or highlights physical symptoms reported in terms of HRQoL.9 There is, to date, little definitive evidence regarding an association between smoking and HRQoL10 11 and research has often focused on long-term survivors of lung cancer.10 Given the importance of HRQoL to lung cancer patients who face a heavy symptom burden and limited survival, it is vital to understand the factors that can compromise HRQoL in the months following diagnosis. Qualitative techniques are particularly useful in situations, such as this, where there has been little or no previous research.12 Adopting a qualitative approach allows researchers to understand key issues and refine questions and variables of interest for further study.12 The aims of this study were therefore to explore patients’ perceptions of their quality of life, taking into account their views about smoking.
METHOD Sample and recruitment
Adult patients with a pathologically confirmed diagnosis of advanced stage lung cancer and estimated survival greater than 6 months were included. Exclusion criteria were patients with limited English, severe 1
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Research Table 1 Outline of interview schedule Topic
Questions
Background Quality of life
Can you tell me what a typical day is like for you? Have you heard the term quality of life before? What does it mean to you? Tell me about your current quality of life Can you tell me about how much you are able to do physically? Can you tell me about your social life? Do you see friends and family as much as you would like? What do you do to relax? Do you worry about your illness? Are you currently employed? How do you find remembering and learning new things? How do you feel about any changes that have happened? Has anything in particular helped or hindered your coping? How regularly do you see medical staff? How do you feel about that? Regarding treatment, would you have done things differently knowing what you now know? Would you say your illness has changed you as a person?
Physical activity Social and family life
Cognition
General coping Treatments and hospital
General General prompts for all topics
Do you feel that changes are due to general ageing or your illness? How have you come to terms with changes? Overall do you think your idea of what is a good [insert topic] is different to what it was before your illness?
comorbid conditions or psychiatric disorder. Patients were recruited from the North Trent Cancer Research Network using a purposive, maximum variation sampling strategy. Interviews were conducted with nine lung cancer patients and interviewing ceased when theoretical saturation was achieved.
Medical and demographic data
Demographics, diagnosis, performance status13 and treatment were obtained from hospital records. Two patients quit smoking around the time they were diagnosed and three continued to smoke. The remainder quit smoking many years before diagnosis (10–40 years previously), two in response to health problems.
Procedure
Ethical approval was obtained from the NHS National Research Ethics Committee: Yorkshire and The Humber—Sheffield (REC reference: 08/H1308/243). Eligible patients were approached by a researcher during a routine oncology outpatient appointment. They were offered an information sheet and later contacted by telephone to arrange interviews (mean 42 days, range 9–118). Signed informed consent was obtained at the interview. Patients completed a single semistructured interview that took place at their home or the University of Sheffield between July 2010 and February 2011. In order to minimise bias during analysis, a reflective account of the research process was kept by the interviewer (CR). Interview schedule
The interview was structured to explore the following areas: typical daily activities; quality of life, physical activity; social and family life; cognition and general coping; and general comments (table 1). Prompts and further questions were guided by individual responses to ensure that the views expressed were not influenced unduly by the interviewer. Interviews lasted about 1 h (mean 53 min). 2
Analysis
Interviews were audio-taped and transcribed verbatim (maintaining anonymity). Data were analysed using interpretative phenomenological analysis (IPA) following published guidelines.14 IPA is a data-driven analytical technique widely applied in health and clinical psychology. Themes common across interviews are identified from within the data itself and related post hoc to the existing literature. All transcripts were coded independently by two authors (CR and HM). Inter-rater reliability was high (96% agreement). Differences were discussed and consensus reached without consulting a third person. Emerging themes were discussed with the wider research group to ensure credibility. Data were held securely on Microsoft Word documents and codes were annotated by hand on copies of transcripts. RESULTS Demographic and medical characteristics are shown in table 2. Five super-ordinate themes were identified: (1) effects of illness on quality of life, (2) family support (3) coping strategies, (4) medical support and
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Research Table 2
Demographic and medical profile of participants (n=9)
Characteristic
n
Sex 6 Males 3 Females Age (years) Range 57–73 Mean 66 Diagnosis 7 NSCLC 2 SCLC Performance status (PS) 2 PS-0 7 PS-1 Treatments Chemotherapy 7 Yes 2 No Radiotherapy 4 Yes 5 No Time since diagnosis (weeks) Range 8–24 Mean 14 Smoking status 6 Quit 3 Current NSCLC, non-small cell lung cancer; SCLC, small cell lung cancer.
(5) smoking. Examples of comments supporting each theme are presented in tables 3–7.
Effects of illness on quality of life
When asked directly about their quality of life, many explained that it was related to the extent to which they could achieve physical tasks (table 3). For some, this represented a series of limitations and focused on what they could no longer do. Others were more positive and pleased to be able to achieve as much as they did given their physical limitations. They had adjusted their expectations to match their physical ability. However, life with cancer affected daily activities and became organised around appointments and anticipated treatment side-effects, so that an entire day could be organised around one hospital appointment. During chemotherapy most tried to avoid social situations, and limit contact with friends and family rather than risk compromise their own immunity. This could be difficult when patients had to cancel visits with children and grandchildren who were experiencing minor illnesses. One patient was so fearful about leaving home they showed symptoms of anxiety and depression.
HRQoL was also compromised across a range of areas as demonstrated in the remaining super-ordinate themes. Family support
Almost all patients described plenty of support from many sources, including partners, family, friends and medical staff (table 4). Most had received positive reactions from others but some identified a general social stigma associated with cancer. There were instances where friends and acquaintances kept a distance, causing distress and feelings of isolation. The impact of diagnosis had a substantial effect on relationships as patients and partners adapted to changing routines and assumed new roles. Couples struggled to achieve a balance between retaining independence and accepting assistance. Frustrations could be directed at partners, particularly as physical abilities declined. Many were concerned about the lack of support for their partners. It could be difficult for partners to access respite and support of practical benefit, with adverse implications for physical health and mental well-being. Concern for partners’ well-being often resulted in patients withholding information about physical limitations so as not to burden their partners further. However, this strategy could increase stress and anxiety within the relationship. Couples who openly discussed symptoms and concerns appeared better at coping and managing the changing dynamics of their relationship compared with those who withheld information from the partner. Coping strategies
A range of different coping strategies was reported. Some were very practical, such as adapting routines, changing expectations of physical capability, and focusing on hobbies and interests (table 5). Other strategies involved maintaining a positive attitude and focusing on the future. The effectiveness of focusing on the future differed depending on the perspective
Table 3 Examples of comments for theme: ‘Effects of illness and quality of life’ (patient reference number in parentheses) Secondary theme
Comments
Overall evaluation Adjustments
Quality of life for me is the independence both physically and mentally to do what I want (9) Getting the best out of life that you can. Making the, making everything worthwhile really…It’s acceptance of how things are at the moment (4) The only time I’m going out is to the hospital, you know? So I’ve got all these nice clothes upstairs and the only time I get dressed up is to go to the hospital (5) You know it’s like a big balloon in middle of day where I’ve got to go and I’m only there for quarter of an hour (1) If any of babies have got colds or anything like that they keep away (3) I had the grandson to stay once a fortnight … I’ve just not been able to have him come and stay and I really miss him… …would have to cancel and that upsets me. I don’t like to do that to people when they’re expecting me. And if I’ve been looking forward to it as well I don’t want to not do it (9) It’s depressing you know. I’ve never been used to staying in the house. I feel like I’m confined to barracks, you know? I suppose in some respects it’s my choice because I’m a bit paranoid about getting an infection … I just don’t want to get an infection you see? That’s why I stay in (5)
Comparing with life before diagnosis Appointments Cancelling
Fear, anxiety and depression
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Research Table 4 Examples of comments for theme: ‘Family support’ (patient reference number in parentheses) Secondary theme
Comments
Cancer stigma
Positive— …lots of friends have stepped up their contact. …I mean you can’t fault them. They jump in and control the situation so there’s no chance of us [pause] if you like falling out of the net. No. No way (6) Negative—I haven’t seen any of the others. They’ll phone me up now and again and I’ll get the odd text message but they’re a bit wary to come and see me which is strange isn’t it because ’cause you’ve got cancer doesn’t make you a different person, does it? (5) I think with my daughter if I need help I’ve to say so you know. She’s one of those sort of people. If I say so then she’s there. But I’ve always been sort of an independent Mum…you have to be self-reliant don’t you and I can’t accept that I’m not totally in control anymore… …and I keep being told that I’ve not to worry about it or you know these things are not important but they are (4) We’ve had the odd row…because it’s easy to become [pause] not institutionalised [pause] but to expect people to start doing things for you… (9) What can she do if I tell I’ve got a bad back or anything? She can’t do nothing. Nothing at all. So there’s things I don’t always tell her. And that’s when she gets mad (2) If anything I’m worried about it’s her because she will not ask for help. That’s difficult. And how you persuade her to ask for help and how you persuade her to ask for somebody to talk to I don’t know (6)
Change of roles
Communication Concern for partner’s needs
taken. Those who were anxious and worried about how their death might affect their partner and family became visibly distressed during the interview. However, when the future was contextualised in terms of hobbies, interests and future ambitions, there was a sense of hope and optimism that became a strategy for coping with the unknown element of disease progression. Many spoke of a time when ‘things would go back to normal’ rather than acknowledge that this was unlikely. A general underlying concern stemmed from not understanding the illness completely or reasons for particular treatments. Three patients felt they would cope better if they could access more information. Although hospital doctors were seen as approachable and willing to address concerns, patients did not always feel able to elicit the information they required. They acknowledged that sometimes this was because they did not ask the right questions or know what to ask. One patient was frustrated at not being able to access the depth of information wanted, and suggested that doctors should tailor their responses depending on individual interest.
broken in an unsympathetic manner. Others had experienced a prolonged period of illness before they were referred to hospital and were often left with residual feelings of shock and anger that made it harder to accept the diagnosis. Most patients had met a Clinical Nurse Specialist and were given a point of contact for queries. A small number were reluctant to contact palliative care nurses as they perceived this type of help to be suitable for end-of-life care rather than helpful in the day-to-day practicalities of dealing with illness and treatment symptoms. However, hospital staff were generally regarded very positively and this helped to make it easy to accept treatment advice. Two patients who had recently quit smoking argued that they had a moral duty not to smoke in order to assist the medical teams in their treatment efforts. Staff attitudes around smoking appeared to be associated with patients’ smoking choices. There was a belief among those who had recently quit that medical staff would feel a personal slight when patients smoked. However, staff were reported to assure patients that this was not the case.
Medical support
Smoking
The manner in which the diagnosis was handled had a substantial impact on emotional adjustment (table 6). Some felt that news of their diagnosis had been
Patients did not necessarily believe that smoking contributed to their lung cancer, although those who quit on diagnosis were sure that smoking was to blame
Table 5 Examples of comments for theme: ‘Coping strategies’ (participant reference number in parentheses) Secondary theme
Comments
Family Future orientation
But I worry if anything happened to me would they be able to cope. I worry about the pressure its put on [wife] all the time. (2) If I could get back to what I were [pause] well basically I know I’m never going to be same but if I can get back to [pause] I was doing pretty good… (1) ’Cause you know as soon as I’ve got the all clear I shall book a cruise. I’m even thinking about buying a new static caravan next year… (5) I think the medical staff have a very difficult line to walk on in how they keep their patient informed and what they done and I appreciate they work on what I would look at as a common denominator and they work on that. What they’ve got to sometimes do is to realise that the patient may want to know a bit more and they’ve got to know how to pass that over (6)
Information from medical staff
4
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Research Table 6 Examples of comments for theme: ‘Medical support’ (participant reference number in parentheses) Secondary themes
Comments
Diagnosis
… what I am still very, very angry about and that is the amount of time it took for our GPs to actually do something. … And I’d so much faith in the doctors but unfortunately I don’t anymore (7) ‘But as I say I could murder a cigarette now but it’s just [pause] be just futile. Waste of all them people’s time that’s tried to save my life’ (1) ‘Not when you see the amount of work that these nurses and doctors put in to try to help you, you know? And for them to turn around [pause] they’re just abusing it. I think it’s terrible’ (2) I saw them there at [the hospital]. But they are there they say if you want them to come out. Maybe when things get a little bit worse I will (7) …I says you must be absolutely disgusted in that? She says no if they want to do that we allow them to do it. It’s for their quality of life. They feel better doing that (2)
Supporting medical team by not smoking
Nursing support Views of medical staff and smoking GP, general practitioner.
(table 7). Others speculated that environmental pollutants or chance could be responsible, with only longer-term quitters acknowledging that smoking could also be the cause. Some patients perceived a stigma of smoking but did not feel that they experienced negative effects themselves. Others were keenly aware of stigma. There was resentment about antismoking legislation and a sense that the risks of smoking were inflated. It appeared that this stance was used to rationalise continued smoking. Some patients struggled to quit or reduce their smoking. Those who had recently quit were tempted to smoke but observed they experienced fewer treatment side-effects than those who continued to smoke. This difference was attributed to smoking cessation and provided encouragement not to smoke. Those who continued to smoke justified it in terms of stress relief and argued it was more sensible to give up smoking after treatments were completed to avoid additional stress associated with quitting. At times, medical staff were perceived to endorse these rationalised decisions to continue smoking, allowing patients to feel justified in their reasoning.
DISCUSSION The aims of this research were to explore patients’ perceptions of quality of life taking into account their views on smoking. Our results provide insight into the impact of lung cancer on patients’ HRQoL and the support they receive from family and medical staff. There are implications both for measurement of HRQoL and smoking cessation interventions. Quality of life
HRQoL is a complex evaluation of emotional, social and physical well-being that has an impact on the patients’ functioning. We found that there were many challenges to achieve an adequate social and family life. The lives of patients and their families can become organised around clinic appointments with adverse implications for daily routines and enjoyment of hobbies or social activities. As physical activity became restricted, roles and relationships changed, negatively affecting family relationships. These results follow similar findings from the USA documenting the content of early palliative care interventions with advanced lung cancer patients.15 Topics discussed by patients were not limited to symptom management
Table 7 Examples of comments for theme: ‘Smoking’ (participant reference number in parentheses) Secondary theme
Comments
Causes of cancer
Everybody’s got to think that, why me? But I mean I realise why me, because I was smoking (1—quit smoking) I think it’s just one of them things. ’Cause me, I think everybody’s got a bit of cancer in them somewhere down the line and it just takes something to break it off doesn’t it? Something to set it off (8—continued smoking) It’s too much pushing. This country shouldn’t [pause] I mean you go to France you can smoke anywhere. Go to Holland you can smoke anywhere. There’s only this country that’s pushed this as far as it has and it’s making smokers [pause] they’re restricting smokers and they’re making them feel uncomfortable and I don’t think it’s right. …when you stop smoking… that’s when you pick things up that you wouldn’t normally have picked up. … to me this passive smoking and antismoking campaign I think it’s just gone over top myself. …I don’t believe that smoking causes cancer and I don’t believe in passive smoking… (3) I actually got two friends… Both got lung cancer both still smoking and both very poorly. One’s bad one week, one’s bad another week. Interviewer: And do you think they’re more poorly because they’re carrying on smoking? Oh yeah, definitely. Yeah (2) In fact we were talking to one nurse while I was having my chemo and she accepted the fact that we smoked and she accepted the fact that we shouldn’t try and cut it down because the stress is too much (3)
Social stigma
Symptoms related to smoking
Endorsement of smoking
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Research but included coping, emotional status, relationship and rapport building, and engaging family members.15 These findings further support the conceptualisation that HRQoL is more than performance status or related only to symptoms, and have important implications for choice of HRQoL assessment instruments. The European Organization for Research and Treatment of Cancer (EORTC) QLQ C3016 together with the LC13 lung cancer module17 and Functional Assessment of Cancer-Therapy - Lung (FACT-L)18 are widely used cancer-specific questionnaires which use a multidimensional concept of HRQoL. While this emphasis on the multidimensionality of HRQoL is to be commended, our findings suggest that the social domain in such questionnaires may not tap the full range of issues patients describe. Social functioning assessed by the EORTC considers whether disease interferes directly with usual social engagements.16 The FACT-L emphasises relationships and support but not disruptions to social activity.18 The FACT-L includes a question regarding regrets about smoking but ultimately neither FACT-L nor the EORTC addresses the potential impact of cancer-related stigma. Our interviews suggest that social functioning may be affected at a wider level than amount of social engagement and is not confined exclusively to support from a social network. Perceived stigma surrounding lung cancer or perceived disparity in physiological response to treatments between smokers and nonsmokers may also impact on HRQoL. Thus, future HRQoL research with lung cancer patients should incorporate a multidimensional assessment of HRQoL and consider including additional items that assess a wider concept of social functioning. Support
Patients described support received from healthcare professions, as well as partners, family and friends. There were both positive and negative aspects to support from healthcare professionals. Some were critical of the general practitioners’ management of diagnosis. Mistrust of clinical staff has previously been associated with treatment refusal.19 However, hospital specialists were regarded very positively by those in this study, making it easy for them to accept treatment advice. Some patients did not feel their information needs were met, with potentially adverse consequences. It has been shown that 61% of lung cancer patients require more information and that nonprovision is associated with poorer psychological and physical outcomes20 and treatment refusal.19 A small number viewed support from palliative care nurses as not appropriate or necessary because they believed these services were needed for end-of-life care, and did not meet their current needs. Being given information about such additional services has previously been related to more negative illness perceptions 6
including more consequences, longer timeline, less treatment control, more symptoms, less understanding of the illness and a stronger emotional response.21 However, HRQoL is improved when palliative care is introduced early.22 The role of the partner and wider support systems were an essential part of adaptation to disease and facilitating good HRQoL. However, there were negative consequences when patients shielded family members from the impact of illness. This process, of ‘protective buffering’ is widely reported in the coping and social support literature and is associated with psychological distress among patients and partners.23 24 Further research exploring the role of partner communication of cancer-related issues on adjustment and HRQoL could inform family-based interventions and improve support for newly diagnosed cancer patients. Smoking
Although all patients acknowledged the link between smoking and lung cancer, some denied that their own smoking contributed to their illness. Similar findings have been reported elsewhere.25 26 Some who acknowledged smoking as a cause of their illness quit smoking and believed that medical staff might think negatively of others who smoke postdiagnosis. Patients with lung cancer may feel guilty if they have smoked or stigmatised due to the diseases association with smoking.27 28 Patients who feel that they are blamed for their illness may feel they receive less support from others which may lead to a more pessimistic view of their illness and outcomes. It is important to consider that decisions around smoking appeared to be associated with patients’ opinions about the views of medical staff. Salander26 speculated that to minimise the strain associated with the cognitive incongruence of smoking and lung cancer, patients may interpret comments from clinicians in a way that minimises the harm of smoking. It is also possible that staff may not wish to encourage smoking cessation for fear of appearing to stigmatise patients. Ultimately, this lack of clear communication between patients and staff may jeopardise effective delivery and acceptance of treatment advice, having adverse implications for HRQoL. There is recent evidence that patients, and partners, will accept lifestyle advice about behaviours associated with their disease.29 Gritz et al30 highlighted the important role of clinical staff in promoting smoking cessation among cancer patients. Thus, it might be that diagnosis presents an opportunity for a ‘teachable moment’.31 Given the willingness of the patients we interviewed to accept clinician recommendations, it is possible that similar patients could be amenable to smoking cessation advice if delivered clearly and within the context of treatment options. Furthermore, we suggest that smoking cessation interventions may be acceptable to both patients and
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Research family members at the time of diagnosis. We have added to previous literature25 32 describing the importance of family dynamics for patient well-being and perhaps, ultimately, smoking behaviours. Bastian et al33 also found that white patients with late stage disease were most likely to promote a smoking cessation intervention among friends and family: a profile matching that of the patients interviewed in this study. Strengths and limitations
This study used a qualitative method to bring a depth of understanding to the under-researched area of HRQoL and smoking in lung cancer patients and their partners. As with other qualitative work, it is not possible to make generalisations to the wider population. However, it is possible to make inferences from findings and explore these in the context of existing literature or via testable hypotheses. All qualitative work is potentially at risk from the biases of the researcher. In order to minimise this risk, the researcher kept a reflexive diary and transcripts were independently coded by a second researcher. Credibility of findings was assessed through peer review from the wider research team and coherence of the narrative was considered. Clinical implications
These findings indicate the extent to which patients’ overall well-being can be affected by lung cancer diagnosis and how these effects go beyond physiological impact alone. Clinical staff should consider indices beyond physical status when considering their patients’ HRQoL. Patients described an important role for family in maintaining their HRQoL, suggesting that clinic staff could explore ways to support family members during the adjustment period postdiagnosis and involve them in palliative care planning. Finally, many patients wanted to work with staff to help combat their disease. It was clear that patients were sensitive to staff attitudes about smoking which may affect smoking choices. Therefore, staff working with lung cancer patients may need to deliver clear and consistent messages about the potential risks of continued smoking to both physiological and psychological well-being if they wish to successfully promote smoking cessation. Further, staff may be able to use diagnosis as a time to engage with patients and family members about their smoking behaviours. CONCLUSIONS This study explored the relationship among HRQoL, support and smoking among patients with advanced lung cancer. For patients in this study, HRQoL was not limited to physical activity, but reflected aspects of a multidimensional construct previously described. The implications of lung cancer extend beyond the physical symptoms to incorporate a range of domains.
Refinements to current measures should give greater acknowledgement to the social and family implications of the disease. In this study, family relationships were essential in managing the disease and clinic staff should consider including family members in care planning. Finally, patients value the opinions of medical staff and with clear and consistent messages this could be used to promote smoking cessation among patients and their families. Acknowledgements We are grateful to Sheffield Hospitals Charitable Trust who funded this work (Grant Number 080904). We also acknowledge the contribution of Tracey Short. We most sincerely thank all the patients who took part in this study. We thank all the staff involved at Weston Park Hospital and Royal Hallamshire Hospital, Sheffield, and Doncaster Royal Infirmary, Doncaster. Collaborators None. Contributors CE, SJD, RR, PJW, MQH and JW were responsible for the conception and design of the study. SE, CC, JMH and CR collected the data, which were analysed by CR and HM. Data were interpreted by CR, HM and CE and confirmed by all authors. All authors were involved in drafting and critically appraising the manuscript before providing final approval. Funding This work was funded by Sheffield Hospitals Charitable Trust (grant number: 080904). The funder remained separate to the research process and development of this submission. Disclaimer The views expressed in this publication are those of the authors and have not been influenced by the funding body. Competing interests None. Patient content Data has been removed from these case descriptions to ensure anonymity. Ethics approval NHS NRES Committee: Yorkshire and The Humber—Sheffield. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement No additional data available.
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Quality of life, support and smoking in advanced lung cancer patients: a qualitative study C Rowland, S J Danson, R Rowe, H Merrick, P J Woll, M Q Hatton, J Wadsley, S Ellis, C Crabtree, J M Horsman and C Eiser BMJ Support Palliat Care published online April 30, 2014
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