Family Practice, 2014, Vol. 31, No. 2, 209–214 doi:10.1093/fampra/cmt088 Advance Access publication 24 January 2014
German general practitioners’ views on their involvement and role in cancer care: a qualitative study Anne Dahlhausa,b,c,*, Nicholas Vannemana, Corina Guethlina, Johanna Behrenda and Andrea Siebenhofera
*Correspondence to Anne Dahlhaus, Institute of General Practice, Goethe University Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt am Main, Germany; E-mail: [email protected] Received October 7 2013; revised December 12 2013; Accepted December 23 2013.
Abstract Background. The multidisciplinary and sequential nature of cancer care makes continuity of care for patients difficult. Cancer patients have often known their general practitioners (GPs) for years and are often in constant contact with them. Objective(s). We examined German GPs’ views on their involvement in the care of cancer patients. Methods. We conducted semi-structured interviews with 30 German GPs. Purposeful sampling was applied to secure maximum heterogeneity. Interviews were recorded, transcribed and then analyzed using qualitative content analysis according to Mayring. Results. GPs perceive a clear involvement in the latter phase of cancer care but a mainly sporadic role (as and when required) in earlier phases. They think that greater care contributions from GPs are generally beneficial to cancer patients, as their ability to take the patient’s history, surroundings and co-morbidities into account enables them to provide more patient-centred care. GPs want to stay involved and to know how their cancer patients are progressing, and they complain about slow or non-existent information sharing between providers, as well as insufficient care coordination. They pro-actively try to overcome these obstacles through direct contact with patients and physicians, and by building networks of trusted care providers. Conclusions. Given their long-lasting and close relationships with cancer patients, GPs are in a position to accompany them throughout the whole process of cancer care. However, such general involvement is as yet uncommon. Shared care models may have the potential to take into account the complementary character of primary and specialist care. Key words: Continuity of patient care, doctor–patient relationship, interdisciplinary communication, neoplasms, primary care.
Introduction the emotional and psychosocial stress of cancer diagnoses and treatments (1). The needs arising from this are only partly met by oncology specialists (1,2). Due to fragmentation of care, cancer care patients consult health professionals who have no knowledge of the treatment supplied by previous
After one of their patients has been diagnosed with cancer, general practitioners (GPs) become part of a complex system of care. Cancer patients must contact numerous interdependent services from a multitude of providers and make informed decisions about their care, while simultaneously coping with
© The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: [email protected].
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Institute of General Practice, Goethe University Frankfurt, Frankfurt am Main and bGerman Cancer Research Center (DKFZ) and cGerman Cancer Consortium (DKTK), Heidelberg, Germany. a
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Methods Sampling and recruitment Recruitment for the study took place within the context of a larger qualitative study that was performed as the first part of a mixed methods study and that forms the basis for the development of a nationwide survey on cancer care involving 4000 German GPs. From April 2011 to June 2012, 232 GPs were invited by fax to participate in a semi-structured telephone interview on cancer care in general practice. We received 59
refusals. Non-responders were reminded twice by fax, with each reminder being sent out 7–12 days after the previous one. Recruitment and reminders were stopped once we had reached the target number of interview partners. We conducted a total of 56 interviews in 4 separate series on the topics ‘general role and involvement of GPs in cancer care (series 1)’, ‘palliative medicine for cancer patients/psychosocial care (series 2)’, ‘multimorbidity/complementary medicine in cancer patients (series 3)’ and ‘cancer patient pathways/cancer patient management (series 4)’. Quotes in this manuscript originate from the first interview series, comprising 20 GP interviews on the role of GPs in cancer care (referred to as GP1.1–1.20), as well as from the third interview series that comprised 10 GP interviews on cancer care for multimorbid cancer patients (referred to as GP3.1– 3.10). This was because the interview questions in these two series were concerned more specifically with the role of GPs and their involvement in cancer care. GPs were identified using an online search function of the German Association of Statutory Health Insurance Physicians, as well as from a network of physicians affiliated with the Institute of General Practice at the University of Frankfurt, Germany. To maximize the spectrum of ideas and thereby increase the coverage of relevant aspects, we ensured the sample for each interview series was as heterogeneous as possible with respect to specialty area, urban/rural setting, single/joint practice, gender and length of professional experience (purposeful sampling). This was achieved by allocating participating GPs to the sample of the interview series they complemented best. Toward the end of recruitment, we aimed to increase heterogeneity by providing further reminders only to those GPs whose profile was not typical for their respective sample with regard to gender, federal state and urban/rural setting.
Data collection The interviews began by asking the GP to report on a recent cancer patient that he or she was particularly involved with, or on a multimorbid cancer patient with whom he or she had experienced typical care problems. Subsequently, open-ended questions on cancer care were asked (example questions presented in Table 1). The interviews were conducted by a physician, a medical student, a public health student and a student of educational science, all of whom had been trained and supervised by a psychologist with experience in qualitative research. They were electronically recorded, transcribed verbatim and anonymized. Prior to the start of the interviews, consent was obtained verbally and in written form afterwards. The mean duration of the interviews was 30.4 ± 6.3 minutes. The institutional review board of the University Hospital Frankfurt/Main decided that specific ethical approval was not required.
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providers (3). In Germany, this is particularly common due to the institutionalized separation of ambulatory (both primary and secondary) and inpatient care. In Germany, GP care is provided solely in the outpatient setting and the majority of GPs work in solo, or small shared private practices, with no formal links to specialists or inpatient hospital-based providers. Patients are allowed to self-refer and directly access other care providers (4). Many adult patients are registered with a specific GP whom they consult for help in managing their acute and chronic diseases (5). Being acquainted with the patients’ co-morbidities, their social surroundings and personal history, GPs are perfectly positioned to provide their cancer patients with comprehensive care (6). In qualitative interviews, cancer patients expressed their wish for better communication and coordination between hospitals and GPs and a stronger involvement of GPs in their care process (7). Few studies have asked GPs about their role and involvement in cancer care, and most of those that have utilized quantitative surveys and closed-ended questions (8–11). Although such surveys allow for the quantification of a predefined question, they do not usually explore further relevant questions and do not provide the respondent with the opportunity to express his views in free text form. Johansen et al. (12), however, conducted a qualitative study involving semi-structured interviews of Norwegian GPs, and concentrated on the perceived role and tasks of GPs in cancer care. In 2008, Mitchell et al. (13) arranged focus groups with GPs to find out about their involvement in cancer care in Australia and reported that being involved in their cancer patients’ ongoing care was the exception rather than the rule. Although it is well known that most cancer patients in Germany are in regular contact with their GPs during the course of cancer care, if and how GPs are involved in the care of their cancer patients has, to the best of our knowledge, not yet been described. We, therefore, conducted semi-structured telephone interviews with GPs to find out how they perceive their roles, involvement and cooperation in cancer care. The aim of this qualitative approach is to identify relevant aspects and to support the development of a GP survey on cancer care in Germany.
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Table 1. Example interview questions on the role of GPs and their involvement in cancer care As a GP, you are involved in all the previously mentioned stages of cancer care. Does your practice have particular areas of focus? To what extent are you consulted when it comes to recommending specialists or hospitals, and explaining interventions/risks etc.? In what situations do you personally choose to involve external ‘service providers’ in the care of your patients? Which ones? What are your feelings about the cooperation with these ‘service providers’? Can you give examples of particularly good or poor cooperation? When do you feel your relationship with your cancer patients is at its most intense? In your opinion, what aspects of cancer care can only be provided by GPs? How do you view your role as a GP in this respect? What is the greatest challenge you face when providing care for multimorbid cancer patients?
Analysis
Results Characteristics of interviewed GPs We interviewed 16 female and 14 male GPs from 5 different German federal states. Work experience ranged from 3 to 41 years with a median of 13.5 years (n = 30). Seven GPs were based in a rural town (less than 5000 inhabitants), 2 GPs in a provincial town (5000–20 000 inhabitants), 12 GPs in a mediumsized town (20 000–100 000 inhabitants) and 9 in a large town (over 100 000 inhabitants) (15). A total of 13 GPs worked in a joint practice and 17 GPs in a single-handed practice.
GP involvement in cancer care changes over the course of the disease GPs said the degree of their involvement varied depending on the phase of care. Although they are not particularly involved in the curative and palliative therapy of cancer patients, they are in demand when it comes to palliative home-based care. They answer questions and support the patient after he or she has navigated the often complex and confusing web of providers: (…) then I am the first point of contact and obliged to bear responsibility for carrying out any diagnostic tests that may be necessary, but as a GP I am not particularly involved in the actual specialist treatment (…) depending on how things develop, the circle closes a bit when it comes to further
GPs describe how their involvement could generally improve cancer care GPs emphasized their fundamental role in accompanying the patient throughout the whole course of cancer care. Having known most of their cancer patients for many years, GPs stressed the broader context within which the cancer diagnosis and treatment occurs. GPs mentioned their personal relationships with patients and their familiarity with his or her social and familial environments. In addition, they have bio-medical knowledge of their patients’ co-morbidities and health history, and understand the relevance of these factors to the provision of patient-centred care to cancer patients: (…) I have often known the patients for a long time (…) and also know their living conditions and their relatives. And then, when I don’t know the staff in the hospitals personally, it’s sometimes really difficult to explain that in view of the current stage of the disease certain therapies are pointless. Or the other way round. I think it is worth doing something and the hospital staff then say: What for? She’ s demented, we don’t need to do anything any more. (GP3.2)
GPs demarcated their own role in comparison to the ‘specialists’ role’ by stressing that they focus more on cancer patients’ quality-of-life, and when deciding on further treatment for both cancer and co-morbidities, they bear in mind the prognosis for the disease and the burden and side effects of the treatment: (…) I keep in mind that cancer patients need complicated medication regimens with all their side effects, and consider to
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All interviews were analyzed using Mayring’s qualitative content analysis, a well known and commonly used method in Germany (14). An inductive approach was taken to the analysis. To develop the coding scheme, the first five interviews of each series were coded by two researchers independently of one another and then discussed under supervision of the psychologist until a final code set was agreed upon. Emerging themes were discussed with GPs associated with the Institute of General Practice to check that these views are also shared by other GPs. All interviews were then analyzed using the final coding scheme. For publication, the citations were translated into English by a native speaker.
health care and palliative medicine (…) The patients return to the GP a bit after leaving the slog of specialist and hospital treatment behind them. Things calm down a bit after the treatment and are then a bit more my responsibility again. (GP1.4) (…) as soon as the oncologists are done with their radio- and chemotherapies, and they’ve told the patients that they’ve had all the treatment medicine can offer, then they all end up back with me (laughs) (…) most patients end up back with me, (…) distraught because the oncologist has told them the therapy is over. (GP1.12)
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GPs reflected on the difficulties patients face after receiving a cancer diagnosis, particularly with respect to understanding and responding to the consequences and the need to make treatment choices and plans. GPs saw themselves as being there to help the patient better understand his diagnosis and its consequences for care. They want to be a resource for patients to come back to, someone they can ask questions and receive clarification from, and thus provide a form of cancer care that is less disease- and treatment-focused and more concerned with symptoms and the psychosocial dimensions of cancer: (…) when the diagnosis is made in a hospital, a briefing takes place which may not be at all bad, but because of all the agitation that inevitably follows the communication of the diagnosis, the patient only remembers about 10% of what’s said and before he returns, so-to-say, to his senses and the questions (…) come back to him in full consciousness, even if they have already been discussed, the briefing is over (…) and then the problem with hospitals is that afterwards (…) hardly anyone speaks to you any more (…) and there’s a break in communication after the initial diagnosis. That’s when the GPs are called in. (GP1.11) (…) that often happens when the diagnosis is made because most people are shocked and (…) and it’s necessary to calm down a bit (…) That’s an important moment in the diagnosis (…) when you introduce the perspectives, show that life goes on, now the real work begins, now they are part of the process, now we’re going to do something with them. Then the patient notices that he is not all alone and that there are people that are at his side and they are not just treating him, but are in touch with him and they know what it’s all about. I think that is very important to patients. (GP1.15)
GPs want better information sharing and cooperation with other providers Although feeling responsible for their cancer patients and advocating more integrated care, some of the interviewed GPs said
they are barely involved in the specialist care their patients received. The GPs cited below repeatedly emphasized that they want to know what happens to their patients because they feel responsible for them and have ‘to deal with everything else’: (…) we’ve got a hospital here that also provides cancer treatment for outpatients, you see? And they want to do everything themselves; do blood tests and everything, so I’m left out completely. I’m not happy about that. I would like to know what is happening to the patient. Because I’m also the one that has to treat everything else, you see? They don’t do that, you see? (GP3.3)
Furthermore, one female GP spoke with frustration about the lack of care coordination between herself and clinicians, and the resulting inconsistencies in care. She further described the impact such situations have on her work, as she then requires additional time to explain setbacks to her patients: (…) the patient, the one with the pancreatic cancer – the initial therapy adjustment was done in hospital with good old Palexia, … so I sat here for an hour (…) and with 20 people in the waiting room had to explain to him why Palexia wasn’t such a great choice (…) and that’s what I can’t stand (…) that’s when I call up and say enough is enough. Because the patient can’t understand what’s going on, right? He gets his medication plan from me, right? And then he goes to hospital and they do things completely differently. Then he comes back here, and I think to myself, hmmm, this drug is unsuitable, ok? (…) And so I start to change the medication again. And that’s (…) patients can’t understand what’s going on. Not at all. Why it’s not possible to be on the same wavelength. But that ends up being my problem, you see? Because the hospital gets rid of the patients soon enough. (GP3.2)
As a lack of information on their patients makes it difficult to provide patient-centred care, some GPs pro-actively go out of their way to track it down. This requires calling the patient themselves or demanding information from specialists and clinics. (…) and those are questions that remain unanswered. And so you have to pursue the matter, and possibly give the patient a call. (GP3.5) (…) you have to chase everything up by phone, so that if he went to a cancer specialist you get the laboratory results. And if you want to have them yourself, then you have to plead with them to fax them over, or other information on medications and consultations. (GP3.4)
However, not all GPs complained about their cooperation with other providers, adding that cooperation is better when providers are on good terms: (…) Well, with the private oncological practices ... I have a good relationship with them; sometimes we receive calls or feedback without my having to ask ... (GP3.1)
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what extent it’s necessary to continue with another therapy, or whether one can reduce it or stop it completely to lower the effect of interactions and limit the burden generally (…) while at the same time not limiting the patient’s later options. (GP3.1) (…) Well, just really being a bit more realistic, you see? And well, what I notice is that the oncologists brush their patients’ opinions aside. For example, I have a patient with pancreatic cancer who’s got such high blood pressure, as a result of the chemotherapy, that she … such that we have to give her 4 or 5 medications, you see? Because of the chemo’s side effects. And the patient says that’s not what she wants. And the oncologist then says, why not? You’re doing well, aren’t you? Well, in my opinion that’s ignoring the reality of the situation. I’m not there to treat the disease, am I? I’m there to treat the patient. (GP3.2)
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(…) Hmm, yes, of course. It’s just that I’m on better terms with the private oncologists we have here. I’ve known them ... they’ve been around for years. And they keep in touch by phone. (GP3.3)
Discussion Summary of findings
How this relates to other studies GP involvement in cancer care has been shown to be beneficial to cancer patients: Patients in the first year following the diagnosis of cancer had higher quality-of-life scores when they had indicated more frequent GP involvement in cancer care (16). As described in our interviews, GPs provide all-round care throughout the course of the disease: they help patients to deal with the diagnosis and answer questions beyond the predefined doctor–patient communication paths that are typical of inpatient care, especially within the context of the diagnosis (12). Patients view GPs as an important source of supportive care to discuss treatment decisions, offer emotional support, and treat co-morbidities and the side effects of treatment (9,17). There is general agreement among specialists, GPs and patients that GPs play an important role in providing emotional support throughout both treatment and advanced cancer care, symptom relief during treatment and information during advanced cancer care (9). In the transition from treatment to follow-up care, when patients leave a period of intense contact with specialists behind them and must face up to future uncertainty (17), patients reported a lack of support and considered their GP as an important source of care (18). This is supported by studies that show that patients whose follow-ups were mainly provided by their GPs experience favourable post-treatment transitions (19). However, GP real involvement was described to be minor in many phases of cancer care, especially during the treatment phase (20). Mitchell et al. (13) reported that GPs’ role in cancer care alternates between active advocacy during diagnosis and palliation, and ambivalent redundancy in between. In our interviews, GPs desire stronger involvement and better cooperation,
which is in concordance with the literature (21,22). In a focus group study by Wood (23), GPs were dissatisfied that cancer specialists do not assign them a specific role in follow-up care.
Strengths and limitations This study is the first in Germany to investigate the GP’s role in cancer care. The strengths of this study include the participation of GPs from a wide geographical area of Germany and with varying degrees of professional experience. The codes stem from code-lists that were developed from the data from several interview series, and they thus were capable to reflect the content comprehensively. Heterogeneity was taken into account by explicitly allowing a whole range of opinions, i.e. developing a coding scheme that was able to account for different perspectives on the same issue by way of looking for general themes and paraphrasing. As GPs were generally reluctant to give up their practice time for interviews, their duration was short. However, the semi-structured approach ensured topic-relevant content, while leaving enough time to express a broad range of opinions on the involvement of GPs in cancer care. GPs’ time limitations meant that no member check could be carried out, but the role of the GP in cancer care was discussed with GPs associated with the Institute of General Practice, and they particularly emphasized the patient-centred approach in contrast with the specialists’ approach. No formal reliability check of the coding was carried out, but the codes were intensively discussed by the team of researchers doing the analysis. Negative cases and cases presenting somewhat different views were discussed for the sake of overall credibility (24). Although the topics discussed in these interviews could not be fully resolved and definitive conclusions be drawn, the interviews did identify important themes and domains that require further exploration, either by means of interviews in greater depth, or a structured survey with a more extensive and representative sample that seeks, for example, specific strategies to increase GP involvement.
Conclusions Although being only sporadically involved, GPs have clear views on how to deal with cancer patients and they feel their approach often contrasts with that of specialists. The unique contribution GPs make to cancer care should be valued more highly and GP care be more strongly integrated into standard cancer care. At the very last, this would mean routinely informing GPs on the current state of the disease and the course of treatment. Only a clearly defined policy for information sharing and reciprocal collaboration between providers will make it possible to provide high-quality, patient-centred cancer care (25,26).
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GPs describe their involvement in cancer care as being mainly restricted to providing care when patients consult them, and this varies depending on the phase of the disease. Their overriding aim is to provide patient-centred cancer care that takes into account the patient’s history, co-morbidities and psychosocial needs. As a consequence of not having a formal role and only being the contact person for patients when they consult him, GPs want to be involved and receive information on the care of their cancer patients. They express their frustration with delays in the flow of important information and the lack of coordination of care, and try to overcome this obstacle pro-actively.
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Acknowledgements The authors would like to acknowledge the contributions of E Kojima and C Herrler for their support and assistance in conducting the interviews and analysis. We would like to thank P Elliott who translated the citations and contributed substantially to the manuscript by way of a language review, and last but not least, we are very grateful to all the GPs who voluntarily participated in our study.
Declaration
References 1. Pascoe SW, Neal RD, Allgar VL, Selby PJ, Wright EP. Psychosocial care for cancer patients in primary care? Recognition of opportunities for cancer care. Fam Pract 2004; 21: 437–42. 2. Booij JC, Zegers M, Evers PM et al. Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients. BMC Cancer 2013; 13: 203. 3. Schlette S, Lisac M, Blum K. Integrated primary care in Germany: the road ahead. Int J Integr Care 2009; 9: e14. 4. Busse R, Riesberg A. Health Care Systems in Transition: Germany. Copenhagen, Denmark, 2004. 5. Advisory Council on the Assessment of Developments in the Health Care System. Coordination and integration – Health care in an ageing society. Special report 2009. Baden-Baden, Germany: Nomos Verlagsgesellschaft, 2009. 6. Campbell NC, MacLeod U, Weller D. Primary care oncology: essential if high quality cancer care is to be achieved for all. Fam Pract 2002; 19: 577–8. 7. Lundstrøm LH, Johnsen AT, Ross L, Petersen MA, Groenvold M. Cross-sectorial cooperation and supportive care in general practice: cancer patients’ experiences. Fam Pract 2011; 28: 532–40. 8. Demagny L, Holtedahl K, Bachimont J et al. General practitioners’ role in cancer care: a French-Norwegian study. BMC Res Notes 2009; 2: 200. 9. Aubin M, Vézina L, Verreault R et al. Patient, primary care physician and specialist expectations of primary care physician involvement in cancer care. J Gen Intern Med 2012; 27: 8–15. 10. Johnson CE, Lizama N, Garg N et al. Australian general practitioners’ preferences for managing the care of people diagnosed with cancer. Asia Pac J Clin Oncol 2012 December 26 [Epub ahead of print] doi:10.1111/ajco.12047. 11. Dworkind M, Shvartzman P, Adler PS, Franco ED. Urban family physicians and the care of cancer patients. Can Fam Physician 1994; 40: 47–50.
12. Johansen ML, Holtedahl KA, Rudebeck CE. A doctor close at hand: how GPs view their role in cancer care. Scand J Prim Health Care 2010; 28: 249–55. 13. Mitchell GK, Burridge LH, Colquist SP, Love A. General Practitioners’ perceptions of their role in cancer care and factors which influence this role. Health Soc Care Community 2012; 20: 607–16. 14. Mayring P. Qualitative content analysis. Forum Qual Soc Res 2000; 1: 20. http://www.qualitative-research.net/index.php/fqs/article/ view/1089/2386 (accessed on 12 January 2014). 15. Federal Institute for Research on Building, Urban Affairs and Spatial Development. Continuous City Observation – District Classifications. Types of Cities and Communities in Germany [German]. http://www. bbsr.bund.de/BBSR/DE/Raumbeobachtung/Raumabgrenzungen/ StadtGemeindetyp/StadtGemeindetyp_node.html (accessed on 12 January 2014). 16. Sisler JJ, Brown JB, Stewart M. Family physicians’ roles in cancer care. Survey of patients on a provincial cancer registry. Can Fam Physician 2004; 50: 889–96. 17. Kendall M, Boyd K, Campbell C et al. How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers. Fam Pract 2006; 23: 644–50. 18. Anvik T, Holtedahl KA, Mikalsen H. “When patients have cancer, they stop seeing me”–the role of the general practitioner in early follow-up of patients with cancer–a qualitative study. BMC Fam Pract 2006; 7: 19. 19. Sisler JJ, Taylor-Brown J, Nugent Z et al. Continuity of care of colorectal cancer survivors at the end of treatment: the oncology-primary care interface. J Cancer Surviv 2012; 6: 468–75. 20. McWhinney IR. Caring for patients with cancer. Family physicians’ role. Can Fam Physician 1994; 40: 16–9. 21. Gorman DR, Mackinnon H, Storrie M, Wilson GS, Parker S. The general practice perspective on cancer services in Lothian. Fam Pract 2000; 17: 323–8. 22. Del Giudice ME, Grunfeld E, Harvey BJ, Piliotis E, Verma S. Primary care physicians’ views of routine follow-up care of cancer survivors. J Clin Oncol 2009; 27: 3338–45. 23. Wood ML. Communication between cancer specialists and family doctors. Can Fam Physician 1993; 39: 49–57. 24. Hannes K. Critical appraisal of qualitative research. In: Noyes J, Booth A, Hannes K et al. (eds) Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1 (Updated August 2011). Cochrane Collaboration Qualitative Research Methods Group. http://cqrmg. cochrane.org/supplemental-handbook-guidance (accessed on 12 January 2014). 25. Quillin JM, Tracy K, Ancker JS, et al. Health care system approaches for cancer patient communication. J Health Commun 2009; 14: 85–94. 26. Wagner EH, Aiello Bowles EJ, Greene SM et al. The quality of cancer patient experience: perspectives of patients, family members, providers and experts. Qual Saf Health Care 2010; 19: 484–9.
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Funding: German Cancer Aid (110022). Ethical approval: the institutional review board of the University Hospital Frankfurt/Main decided that specific ethical approval was not required. The study was conducted in accordance with the ethical standards laid out in the 1964 Declaration of Helsinki. Conflict of interest: none.
Family Practice, 2014, Vol. 31, No. 2
German general practitioners’ views on their involvement and role in cancer care: a qualitative study Anne Dahlhausa,b,c,*, Nicholas Vannemana, Corina Guethlina, Johanna Behrenda and Andrea Siebenhofera
*Correspondence to Anne Dahlhaus, Institute of General Practice, Goethe University Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt am Main, Germany; E-mail: [email protected] Received October 7 2013; revised December 12 2013; Accepted December 23 2013.
Abstract Background. The multidisciplinary and sequential nature of cancer care makes continuity of care for patients difficult. Cancer patients have often known their general practitioners (GPs) for years and are often in constant contact with them. Objective(s). We examined German GPs’ views on their involvement in the care of cancer patients. Methods. We conducted semi-structured interviews with 30 German GPs. Purposeful sampling was applied to secure maximum heterogeneity. Interviews were recorded, transcribed and then analyzed using qualitative content analysis according to Mayring. Results. GPs perceive a clear involvement in the latter phase of cancer care but a mainly sporadic role (as and when required) in earlier phases. They think that greater care contributions from GPs are generally beneficial to cancer patients, as their ability to take the patient’s history, surroundings and co-morbidities into account enables them to provide more patient-centred care. GPs want to stay involved and to know how their cancer patients are progressing, and they complain about slow or non-existent information sharing between providers, as well as insufficient care coordination. They pro-actively try to overcome these obstacles through direct contact with patients and physicians, and by building networks of trusted care providers. Conclusions. Given their long-lasting and close relationships with cancer patients, GPs are in a position to accompany them throughout the whole process of cancer care. However, such general involvement is as yet uncommon. Shared care models may have the potential to take into account the complementary character of primary and specialist care. Key words: Continuity of patient care, doctor–patient relationship, interdisciplinary communication, neoplasms, primary care.
Introduction the emotional and psychosocial stress of cancer diagnoses and treatments (1). The needs arising from this are only partly met by oncology specialists (1,2). Due to fragmentation of care, cancer care patients consult health professionals who have no knowledge of the treatment supplied by previous
After one of their patients has been diagnosed with cancer, general practitioners (GPs) become part of a complex system of care. Cancer patients must contact numerous interdependent services from a multitude of providers and make informed decisions about their care, while simultaneously coping with
© The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: [email protected].
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Institute of General Practice, Goethe University Frankfurt, Frankfurt am Main and bGerman Cancer Research Center (DKFZ) and cGerman Cancer Consortium (DKTK), Heidelberg, Germany. a
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Methods Sampling and recruitment Recruitment for the study took place within the context of a larger qualitative study that was performed as the first part of a mixed methods study and that forms the basis for the development of a nationwide survey on cancer care involving 4000 German GPs. From April 2011 to June 2012, 232 GPs were invited by fax to participate in a semi-structured telephone interview on cancer care in general practice. We received 59
refusals. Non-responders were reminded twice by fax, with each reminder being sent out 7–12 days after the previous one. Recruitment and reminders were stopped once we had reached the target number of interview partners. We conducted a total of 56 interviews in 4 separate series on the topics ‘general role and involvement of GPs in cancer care (series 1)’, ‘palliative medicine for cancer patients/psychosocial care (series 2)’, ‘multimorbidity/complementary medicine in cancer patients (series 3)’ and ‘cancer patient pathways/cancer patient management (series 4)’. Quotes in this manuscript originate from the first interview series, comprising 20 GP interviews on the role of GPs in cancer care (referred to as GP1.1–1.20), as well as from the third interview series that comprised 10 GP interviews on cancer care for multimorbid cancer patients (referred to as GP3.1– 3.10). This was because the interview questions in these two series were concerned more specifically with the role of GPs and their involvement in cancer care. GPs were identified using an online search function of the German Association of Statutory Health Insurance Physicians, as well as from a network of physicians affiliated with the Institute of General Practice at the University of Frankfurt, Germany. To maximize the spectrum of ideas and thereby increase the coverage of relevant aspects, we ensured the sample for each interview series was as heterogeneous as possible with respect to specialty area, urban/rural setting, single/joint practice, gender and length of professional experience (purposeful sampling). This was achieved by allocating participating GPs to the sample of the interview series they complemented best. Toward the end of recruitment, we aimed to increase heterogeneity by providing further reminders only to those GPs whose profile was not typical for their respective sample with regard to gender, federal state and urban/rural setting.
Data collection The interviews began by asking the GP to report on a recent cancer patient that he or she was particularly involved with, or on a multimorbid cancer patient with whom he or she had experienced typical care problems. Subsequently, open-ended questions on cancer care were asked (example questions presented in Table 1). The interviews were conducted by a physician, a medical student, a public health student and a student of educational science, all of whom had been trained and supervised by a psychologist with experience in qualitative research. They were electronically recorded, transcribed verbatim and anonymized. Prior to the start of the interviews, consent was obtained verbally and in written form afterwards. The mean duration of the interviews was 30.4 ± 6.3 minutes. The institutional review board of the University Hospital Frankfurt/Main decided that specific ethical approval was not required.
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providers (3). In Germany, this is particularly common due to the institutionalized separation of ambulatory (both primary and secondary) and inpatient care. In Germany, GP care is provided solely in the outpatient setting and the majority of GPs work in solo, or small shared private practices, with no formal links to specialists or inpatient hospital-based providers. Patients are allowed to self-refer and directly access other care providers (4). Many adult patients are registered with a specific GP whom they consult for help in managing their acute and chronic diseases (5). Being acquainted with the patients’ co-morbidities, their social surroundings and personal history, GPs are perfectly positioned to provide their cancer patients with comprehensive care (6). In qualitative interviews, cancer patients expressed their wish for better communication and coordination between hospitals and GPs and a stronger involvement of GPs in their care process (7). Few studies have asked GPs about their role and involvement in cancer care, and most of those that have utilized quantitative surveys and closed-ended questions (8–11). Although such surveys allow for the quantification of a predefined question, they do not usually explore further relevant questions and do not provide the respondent with the opportunity to express his views in free text form. Johansen et al. (12), however, conducted a qualitative study involving semi-structured interviews of Norwegian GPs, and concentrated on the perceived role and tasks of GPs in cancer care. In 2008, Mitchell et al. (13) arranged focus groups with GPs to find out about their involvement in cancer care in Australia and reported that being involved in their cancer patients’ ongoing care was the exception rather than the rule. Although it is well known that most cancer patients in Germany are in regular contact with their GPs during the course of cancer care, if and how GPs are involved in the care of their cancer patients has, to the best of our knowledge, not yet been described. We, therefore, conducted semi-structured telephone interviews with GPs to find out how they perceive their roles, involvement and cooperation in cancer care. The aim of this qualitative approach is to identify relevant aspects and to support the development of a GP survey on cancer care in Germany.
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Table 1. Example interview questions on the role of GPs and their involvement in cancer care As a GP, you are involved in all the previously mentioned stages of cancer care. Does your practice have particular areas of focus? To what extent are you consulted when it comes to recommending specialists or hospitals, and explaining interventions/risks etc.? In what situations do you personally choose to involve external ‘service providers’ in the care of your patients? Which ones? What are your feelings about the cooperation with these ‘service providers’? Can you give examples of particularly good or poor cooperation? When do you feel your relationship with your cancer patients is at its most intense? In your opinion, what aspects of cancer care can only be provided by GPs? How do you view your role as a GP in this respect? What is the greatest challenge you face when providing care for multimorbid cancer patients?
Analysis
Results Characteristics of interviewed GPs We interviewed 16 female and 14 male GPs from 5 different German federal states. Work experience ranged from 3 to 41 years with a median of 13.5 years (n = 30). Seven GPs were based in a rural town (less than 5000 inhabitants), 2 GPs in a provincial town (5000–20 000 inhabitants), 12 GPs in a mediumsized town (20 000–100 000 inhabitants) and 9 in a large town (over 100 000 inhabitants) (15). A total of 13 GPs worked in a joint practice and 17 GPs in a single-handed practice.
GP involvement in cancer care changes over the course of the disease GPs said the degree of their involvement varied depending on the phase of care. Although they are not particularly involved in the curative and palliative therapy of cancer patients, they are in demand when it comes to palliative home-based care. They answer questions and support the patient after he or she has navigated the often complex and confusing web of providers: (…) then I am the first point of contact and obliged to bear responsibility for carrying out any diagnostic tests that may be necessary, but as a GP I am not particularly involved in the actual specialist treatment (…) depending on how things develop, the circle closes a bit when it comes to further
GPs describe how their involvement could generally improve cancer care GPs emphasized their fundamental role in accompanying the patient throughout the whole course of cancer care. Having known most of their cancer patients for many years, GPs stressed the broader context within which the cancer diagnosis and treatment occurs. GPs mentioned their personal relationships with patients and their familiarity with his or her social and familial environments. In addition, they have bio-medical knowledge of their patients’ co-morbidities and health history, and understand the relevance of these factors to the provision of patient-centred care to cancer patients: (…) I have often known the patients for a long time (…) and also know their living conditions and their relatives. And then, when I don’t know the staff in the hospitals personally, it’s sometimes really difficult to explain that in view of the current stage of the disease certain therapies are pointless. Or the other way round. I think it is worth doing something and the hospital staff then say: What for? She’ s demented, we don’t need to do anything any more. (GP3.2)
GPs demarcated their own role in comparison to the ‘specialists’ role’ by stressing that they focus more on cancer patients’ quality-of-life, and when deciding on further treatment for both cancer and co-morbidities, they bear in mind the prognosis for the disease and the burden and side effects of the treatment: (…) I keep in mind that cancer patients need complicated medication regimens with all their side effects, and consider to
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All interviews were analyzed using Mayring’s qualitative content analysis, a well known and commonly used method in Germany (14). An inductive approach was taken to the analysis. To develop the coding scheme, the first five interviews of each series were coded by two researchers independently of one another and then discussed under supervision of the psychologist until a final code set was agreed upon. Emerging themes were discussed with GPs associated with the Institute of General Practice to check that these views are also shared by other GPs. All interviews were then analyzed using the final coding scheme. For publication, the citations were translated into English by a native speaker.
health care and palliative medicine (…) The patients return to the GP a bit after leaving the slog of specialist and hospital treatment behind them. Things calm down a bit after the treatment and are then a bit more my responsibility again. (GP1.4) (…) as soon as the oncologists are done with their radio- and chemotherapies, and they’ve told the patients that they’ve had all the treatment medicine can offer, then they all end up back with me (laughs) (…) most patients end up back with me, (…) distraught because the oncologist has told them the therapy is over. (GP1.12)
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GPs reflected on the difficulties patients face after receiving a cancer diagnosis, particularly with respect to understanding and responding to the consequences and the need to make treatment choices and plans. GPs saw themselves as being there to help the patient better understand his diagnosis and its consequences for care. They want to be a resource for patients to come back to, someone they can ask questions and receive clarification from, and thus provide a form of cancer care that is less disease- and treatment-focused and more concerned with symptoms and the psychosocial dimensions of cancer: (…) when the diagnosis is made in a hospital, a briefing takes place which may not be at all bad, but because of all the agitation that inevitably follows the communication of the diagnosis, the patient only remembers about 10% of what’s said and before he returns, so-to-say, to his senses and the questions (…) come back to him in full consciousness, even if they have already been discussed, the briefing is over (…) and then the problem with hospitals is that afterwards (…) hardly anyone speaks to you any more (…) and there’s a break in communication after the initial diagnosis. That’s when the GPs are called in. (GP1.11) (…) that often happens when the diagnosis is made because most people are shocked and (…) and it’s necessary to calm down a bit (…) That’s an important moment in the diagnosis (…) when you introduce the perspectives, show that life goes on, now the real work begins, now they are part of the process, now we’re going to do something with them. Then the patient notices that he is not all alone and that there are people that are at his side and they are not just treating him, but are in touch with him and they know what it’s all about. I think that is very important to patients. (GP1.15)
GPs want better information sharing and cooperation with other providers Although feeling responsible for their cancer patients and advocating more integrated care, some of the interviewed GPs said
they are barely involved in the specialist care their patients received. The GPs cited below repeatedly emphasized that they want to know what happens to their patients because they feel responsible for them and have ‘to deal with everything else’: (…) we’ve got a hospital here that also provides cancer treatment for outpatients, you see? And they want to do everything themselves; do blood tests and everything, so I’m left out completely. I’m not happy about that. I would like to know what is happening to the patient. Because I’m also the one that has to treat everything else, you see? They don’t do that, you see? (GP3.3)
Furthermore, one female GP spoke with frustration about the lack of care coordination between herself and clinicians, and the resulting inconsistencies in care. She further described the impact such situations have on her work, as she then requires additional time to explain setbacks to her patients: (…) the patient, the one with the pancreatic cancer – the initial therapy adjustment was done in hospital with good old Palexia, … so I sat here for an hour (…) and with 20 people in the waiting room had to explain to him why Palexia wasn’t such a great choice (…) and that’s what I can’t stand (…) that’s when I call up and say enough is enough. Because the patient can’t understand what’s going on, right? He gets his medication plan from me, right? And then he goes to hospital and they do things completely differently. Then he comes back here, and I think to myself, hmmm, this drug is unsuitable, ok? (…) And so I start to change the medication again. And that’s (…) patients can’t understand what’s going on. Not at all. Why it’s not possible to be on the same wavelength. But that ends up being my problem, you see? Because the hospital gets rid of the patients soon enough. (GP3.2)
As a lack of information on their patients makes it difficult to provide patient-centred care, some GPs pro-actively go out of their way to track it down. This requires calling the patient themselves or demanding information from specialists and clinics. (…) and those are questions that remain unanswered. And so you have to pursue the matter, and possibly give the patient a call. (GP3.5) (…) you have to chase everything up by phone, so that if he went to a cancer specialist you get the laboratory results. And if you want to have them yourself, then you have to plead with them to fax them over, or other information on medications and consultations. (GP3.4)
However, not all GPs complained about their cooperation with other providers, adding that cooperation is better when providers are on good terms: (…) Well, with the private oncological practices ... I have a good relationship with them; sometimes we receive calls or feedback without my having to ask ... (GP3.1)
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what extent it’s necessary to continue with another therapy, or whether one can reduce it or stop it completely to lower the effect of interactions and limit the burden generally (…) while at the same time not limiting the patient’s later options. (GP3.1) (…) Well, just really being a bit more realistic, you see? And well, what I notice is that the oncologists brush their patients’ opinions aside. For example, I have a patient with pancreatic cancer who’s got such high blood pressure, as a result of the chemotherapy, that she … such that we have to give her 4 or 5 medications, you see? Because of the chemo’s side effects. And the patient says that’s not what she wants. And the oncologist then says, why not? You’re doing well, aren’t you? Well, in my opinion that’s ignoring the reality of the situation. I’m not there to treat the disease, am I? I’m there to treat the patient. (GP3.2)
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General practitioners’ involvement and role in cancer care
(…) Hmm, yes, of course. It’s just that I’m on better terms with the private oncologists we have here. I’ve known them ... they’ve been around for years. And they keep in touch by phone. (GP3.3)
Discussion Summary of findings
How this relates to other studies GP involvement in cancer care has been shown to be beneficial to cancer patients: Patients in the first year following the diagnosis of cancer had higher quality-of-life scores when they had indicated more frequent GP involvement in cancer care (16). As described in our interviews, GPs provide all-round care throughout the course of the disease: they help patients to deal with the diagnosis and answer questions beyond the predefined doctor–patient communication paths that are typical of inpatient care, especially within the context of the diagnosis (12). Patients view GPs as an important source of supportive care to discuss treatment decisions, offer emotional support, and treat co-morbidities and the side effects of treatment (9,17). There is general agreement among specialists, GPs and patients that GPs play an important role in providing emotional support throughout both treatment and advanced cancer care, symptom relief during treatment and information during advanced cancer care (9). In the transition from treatment to follow-up care, when patients leave a period of intense contact with specialists behind them and must face up to future uncertainty (17), patients reported a lack of support and considered their GP as an important source of care (18). This is supported by studies that show that patients whose follow-ups were mainly provided by their GPs experience favourable post-treatment transitions (19). However, GP real involvement was described to be minor in many phases of cancer care, especially during the treatment phase (20). Mitchell et al. (13) reported that GPs’ role in cancer care alternates between active advocacy during diagnosis and palliation, and ambivalent redundancy in between. In our interviews, GPs desire stronger involvement and better cooperation,
which is in concordance with the literature (21,22). In a focus group study by Wood (23), GPs were dissatisfied that cancer specialists do not assign them a specific role in follow-up care.
Strengths and limitations This study is the first in Germany to investigate the GP’s role in cancer care. The strengths of this study include the participation of GPs from a wide geographical area of Germany and with varying degrees of professional experience. The codes stem from code-lists that were developed from the data from several interview series, and they thus were capable to reflect the content comprehensively. Heterogeneity was taken into account by explicitly allowing a whole range of opinions, i.e. developing a coding scheme that was able to account for different perspectives on the same issue by way of looking for general themes and paraphrasing. As GPs were generally reluctant to give up their practice time for interviews, their duration was short. However, the semi-structured approach ensured topic-relevant content, while leaving enough time to express a broad range of opinions on the involvement of GPs in cancer care. GPs’ time limitations meant that no member check could be carried out, but the role of the GP in cancer care was discussed with GPs associated with the Institute of General Practice, and they particularly emphasized the patient-centred approach in contrast with the specialists’ approach. No formal reliability check of the coding was carried out, but the codes were intensively discussed by the team of researchers doing the analysis. Negative cases and cases presenting somewhat different views were discussed for the sake of overall credibility (24). Although the topics discussed in these interviews could not be fully resolved and definitive conclusions be drawn, the interviews did identify important themes and domains that require further exploration, either by means of interviews in greater depth, or a structured survey with a more extensive and representative sample that seeks, for example, specific strategies to increase GP involvement.
Conclusions Although being only sporadically involved, GPs have clear views on how to deal with cancer patients and they feel their approach often contrasts with that of specialists. The unique contribution GPs make to cancer care should be valued more highly and GP care be more strongly integrated into standard cancer care. At the very last, this would mean routinely informing GPs on the current state of the disease and the course of treatment. Only a clearly defined policy for information sharing and reciprocal collaboration between providers will make it possible to provide high-quality, patient-centred cancer care (25,26).
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GPs describe their involvement in cancer care as being mainly restricted to providing care when patients consult them, and this varies depending on the phase of the disease. Their overriding aim is to provide patient-centred cancer care that takes into account the patient’s history, co-morbidities and psychosocial needs. As a consequence of not having a formal role and only being the contact person for patients when they consult him, GPs want to be involved and receive information on the care of their cancer patients. They express their frustration with delays in the flow of important information and the lack of coordination of care, and try to overcome this obstacle pro-actively.
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Acknowledgements The authors would like to acknowledge the contributions of E Kojima and C Herrler for their support and assistance in conducting the interviews and analysis. We would like to thank P Elliott who translated the citations and contributed substantially to the manuscript by way of a language review, and last but not least, we are very grateful to all the GPs who voluntarily participated in our study.
Declaration
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Funding: German Cancer Aid (110022). Ethical approval: the institutional review board of the University Hospital Frankfurt/Main decided that specific ethical approval was not required. The study was conducted in accordance with the ethical standards laid out in the 1964 Declaration of Helsinki. Conflict of interest: none.
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