Acta Oncologica, 2015; 54: 569–573
EDITORIAL
Survivorship – searching for new directions Christoffer Johansen1,2 & Susanne Oksbjerg Dalton1 1Department
of Oncology, Copenhagen University Hospital, Copenhagen, Denmark and 2Survivorship, Danish Cancer Research Center, Copenhagen, Denmark In line with the steadily increasing number of cancer survivors, we are forced to take a critical view on our ongoing rehabilitation services and the ideas we promote with regard to life as a cancer survivor [1,2]. A cancer diagnosis is a break in the personal biography and furthermore the treatment might cause not only late effects directly related to the specific treatment received but also speed up the general ageing process thereby increasing the risk for age-related conditions leading to a generally shorter life expectancy [3–5]. Rehabilitation has a long history in medicine from the sanatoriums famously described in ‘The Magic Mountain’ by Thomas Mann [6] mainly applied as an idea about rest, warm baths and other passive strategies, e.g. treatments you receive waiting for healing. Today due to advances in early diagnostics and treatment, cancer survivors are also offered rehabilitation and often these services include physical activity and lifestyle advice about diet low in fat and high in vegetables as well as abstaining from smoking and alcohol consumption. Cancer survivors are enrolled in programs, which in principle offer interventions to reach goals in these lifestyle domains equivalent to the recommendations for the population at large (see, i.e. [7,8]). The recommendations for a healthy lifestyle are, however, not equally taken up by the general population. The higher educated, married and in other ways well-resourced groups in society are adapting health recommendations more readily than more disadvantaged groups even if the lifestyle changes might be appropriate. Probably – although very few studies have investigated this – this is the same or even more so, in cancer survivors. Despite this, we still see lifestyle intervention as a general response to the request from cancer patients, who wants to be guided in how they best can take
part in their own management of their treatment and rehabilitation. While the strategy is relevant, the fact remains that uptake of appropriate lifestyle habits in less resourced cancer patients will be lower. Perhaps we need to seriously rethink the way we recruit cancer patients, the content and/or format of the services we provide to initiate and support lifestyle changes in order to reach and support all cancer survivors. However, let us take another approach to the topic and ask what are the most frequent problems experienced by cancer survivors and if those lifestyle interventions actually address these problems? Pain, fatigue and depression are among the three most prevalent and debilitating symptoms among cancer patients across diagnoses [9]. For some survivors – especially those with a good prognosis – changes in lifestyle may improve prognosis, and relieve fatigue, pain and depression. Nevertheless pain and depression are mostly seen as medical problems. Interesting new evidence suggests that physical activity directly influences depression through muscle metabolism [10]. Depression is associated with elevated kynurenine levels, a tryptophan metabolite generated under stress and inflammatory conditions. Agudelo et al. [10] now reveal how PGC-1a1 overexpression in muscle mimics anti-depressant effects of exercise by promoting kynurenine aminotransferase expression, likely preventing kynurenine from crossing the blood brain barrier to disrupt neural plasticity and thus strengthening the emphasis with which such a generally sensible intervention as exercise should be promoted [10,11]. However, depressed, fatigued and pained persons in the middle of or in the aftermath of cancer treatment may face great barriers to starting and maintaining physical training, thus representing a sub-population of cancer survivors who need more specific interventions taking into
Correspondence: C. Johansen, Survivorship, Danish Cancer Research Center, Copenhagen, Denmark. E-mail: [email protected] (Received 10 March 2015; accepted 12 March 2015) ISSN 0284-186X print/ISSN 1651-226X online © 2015 Informa Healthcare DOI: 10.3109/0284186X.2015.1028764
570 C. Johansen & S. O. Dalton account that such late effects might affect motivation and adherence to a larger degree than in other groups. So our advice to survivors of cancer is actually based on what would address their needs or rather on what we think is the ‘good life’ based on cultural values, what is accessible in society and what we can imagine would benefit? When cancer patients enter the follow-up programs, which we commented on in relation to the European Cancer Rehabilitation & Survivorship Symposium in 2012 [2], the idea of follow-up is to detect recurrences and new primaries, but not much has been discussed about the content of these programs related to the problems cancer survivors face in a later phase compared to the immediate effects of the treatment itself. Not many, if any protocols for interventions aiming at preventing depression, treating fatigue or pain problems within the follow-up care context have been developed, tested in a randomized fashion and published. To the best of our knowledge no formal protocols actually exist, which in a detailed format explicitly describe the aim and content of follow-up to improve the patient’s ability to cope with the life as a cancer survivor. It is our view that this is needed in order to establish a more comprehensive follow-up program, which to a larger extent builds on patient-reported outcomes and self-management among cancer patients. We have no reason to believe that cancer survivors should not be able to observe the symptoms of disease in their body with the same degree of awareness as they had before they were diagnosed with cancer – in the same way that healthy citizens generally observe their own health condition. Our ECRS 2012 Symposium highlighted which type and amount of exercise cancer survivors would benefit from [12–15], if it all was possible to screen for psychological distress [16], presented studies, which investigated the need for rehabilitation and what cancer patients actually want to do when entering rehabilitation programs [17–23]. We highlighted hospital architecture and the association with healing [24]. One track of the program presented papers on effects of cancer treatment, such as post-traumatic growth [25], faith [26] and behavioral changes [27], late morbidity [28,29], sleep disturbances [30], fatigue [31] and difficulty in returning to work [32,33]. We also presented papers concerning the ageing population of cancer survivors [34–36], comprehensive cancer treatment, rehabilitation and follow-up [37,38]. All these aspects established the platform for the ECRS 2014 Symposium held in Copenhagen on 8–9 September 2014, as the 12th Acta Symposium. Almost 400 clinicians, researchers, and people working in the public sector with 45 oral presentations and 98 posters from 23 countries attended this
meeting. As is now a tradition this third ECRS symposium also offered workshops on the Sunday prior to the Symposium and 110 attended these nine workshops led by international capacities in each their field. We selected 28 papers for this issue based on novelty, and overall scientific content. The content of this issue reflects that the field of survivorship research is moving forward and more and more clinicians actually become engaged in research within this area. We present several comprehensive reviews of the evidence collated on important specific late effects as neuropathy [39] and pain [40] providing us with state-of-the-art and thorough discussion of implication for the clinic and further research. No less than four reviews concern physical activity in cancer survivors. Despite an extremely good prognosis after testicular germ cell cancer, increased risk of cardiovascular diseases, which under normal circumstances can be positively moderated by exercise; this has not been evaluated in long-term follow-up studies in this patient group [41]. In fatigue Minton et al. points to the missing link to translational research despite the bulk of research and calls for a scalable intervention, that can be integrated into all stages of the cancer care pathway across secondary and primary care addressing both acute and chronic persisting fatigue [42]. A systematic review and meta-analyses convincingly show a considerable reduction in both recurrences and death among breast cancer patients [43]. A meta-synthesis of qualitative studies on cancer survivors’ experience of participation in exercise-based rehabilitation state that healthcare personal and policy-makers must acknowledge and promote meaningfulness of exercise for the individual and provide new solutions in order to recruit and implement exercise interventions also among underserved patient populations [44]. In regard to fatigue a much needed review of rehabilitation in patients with advanced cancer and palliative care also points to positive effects on physical functioning and other quality of life domains by exercise [45]. In the call for stratified care pathways with an emphasis on supported self-management and shared care Warrington et al. discuss the value and challenges of incorporating patient-reported outcome measures (PROMs) and eHealth interventions into routine follow-up care drawing on their yearlong experience of developing electronic systems for capturing patient reported data in oncology settings [46]. Several papers concern interventions. In two papers, Kazak, editor of Health Psychology and Schofield and Chambers, respectively editors of Journal of Supportive Care in Cancer and European Journal of Cancer Care, each describe how one may develop theory based and manualized complex
Survivorship – searching for new directions 571
behavioral interventions that may push the field of survivorship clinical research forward and lead to implementation of focused interventions in clinical practice [47,48]. Studies of original research include reports of a psychosocial cancer rehabilitation course with no effect on distress [49] whereas mindfulness based stress reduction had no effect on somatic symptoms but on distress and mindfulness [50] among breast cancer survivors. Complex interventions addressing vulnerable patient populations must be carefully developed and tested and we present feasibility studies of exercise intervention in multiple myeloma patients undergoing autologous hematopoietic stem-cell transplantation [51] and optimized COPD treatment in lung and head and neck cancer patients [52] addressing important issues of prevalence, uptake and feasibility to inform appropriately powered trials. Winther et al. map the availability and characteristics of existing childhood cancer cohorts in Europe supporting joined efforts in research in these lowincidence disease groups with high survival and late effects rates [53]. Other original research papers include mapping of serious late effects and how these are associated with specific diseases and patient characteristics [54–62] and how patient and disease characteristics systematically are associated with access to care [63,64], mortality [65,66] or return to work [67]. We still miss the direction(s) of the ship of cancer survivors in order to identify the right direction, as so many aspects of life as a cancer survivor is unknown. We simply do not know the sea we fare on and the islands we will meet when we leave the harbor. In the search for drawing the geography of this white map more collaboration between researchers and clinicians is needed, more protocols, which actually try to address the need for systematic behavioral interventions linked to physiological and psychological understanding of the patient’s situation is needed. Mapping of the trajectory of immediate and later effects of treatment is needed in most cancer diseases. We look forward to the next ECRS symposium, September 2016 in Copenhagen. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
References [1] Dalton SO, Bidstrup PE, Johansen C. Rehabilitation of cancer patients: Needed but how. Acta Oncol 2011;50:163–6. [2] Dalton SO, Johansen C. New paradigms in planning cancer rehabilitation and survivorship. Acta Oncol 2013;52:191–4.
[3] Rowland JH, Bellizzi KM. Cancer survivorship issues: Life after treatment and implications for an aging population. J Clin Oncol 2014;32:2662–8. [4] Holmes HM, Nguyen HT, Nayak P, Oh JH, Escalante CP, Elting LS. Chronic conditions and health status in older cancer survivors. Eur J Intern Med 2014;25:374–8. [5] Leach CR, Weaver KE, Aziz NM, Alfano CM, Bellizzi KM, Kent EE, et al. The complex health profile of long-term cancer survivors: Prevalence and predictors of comorbid conditions. J Cancer Surviv Epub 2014 Oct 16. [6] Mann T. The Magic Mountain. London: Secker and Warburg; 1927. [7] Committee on cancer survivorship: Improving care and quality of life. M. Hewitt, S. Greenfield, E. Stovall, editors. In: From cancer patient to cancer survivor. Lost in transition. Institute of medicine and national research council of the national academies. Washington, D.C.: The National Academies Press; 2005. [8] World Cancer Research Fund International/American Institute for Cancer Research continuous update project report: Diet, nutrition, physical activity, and breast cancer survivors. 2014. Available from: http://www.wcrf.org/sites/default/files/ Breast-Cancer-Survivors-2014-Report.pdf [9] Reyes-Gibby CC, Wu X, Spitz M, Kurzrock R, Fisch M, Bruera E, et al. Molecular epidemiology, cancer-related symptoms, and cytokines pathway. Lancet Oncol 2008;9: 777–85. [10] Agudelo LZ, Femenia T, Orhan F, Porsmyr-Palmertz M, Goiny M, Martinez-Redondo V, et al. Skeletal muscle PGC1a1 modulates kynurenine metabolism and mediates resilience to stress-induced depression. Cell 2014;159:33–45. [11] Moon HY, van Praag H. Muscle over mind. Cell Metab 2014;20:560–2. [12] Jones LW, Alfano CM. Exercise-oncology research: Past, present, and future. Acta Oncol 2013;52:195–215. [13] Lønbro S, Dalgas U, Primdahl H, Overgaard J, Overgaard K. Feasibility and efficacy of progressive resistance training and dietary supplements in radiotherapy treated head and neck cancer patients – the DAHANCA 25A study. Acta Oncol 2013;52:310–8. [14] Hojan K, Molinska-Glura M, Milecki P. Physical activity and body composition, body physique, and quality of life in premenopausal breast cancer patients during endocrine therapy – a feasibility study. Acta Oncol 2013;52:319–26. [15] Midtgaard J. Theoretical and practical outline of the Copenhagen PACT narrative-based exercise counselling manual to promote physical activity in post-therapy cancer survivors. Acta Oncol 2013;52:303–9. [16] Mitchell A. Screening for cancer-related distress: When is implementation successful and when is it unsuccessful? Acta Oncol 2013;52:216–24. [17] Hansen DG, Larsen PV, Holm LV, Rottmann N, Bergholdt S, Søndergaard J. Association between unmet needs and quality of life of cancer patients: A population based study. Acta Oncol 2013;52:391–9. [18] Von Heymann-Horan AB, Bidstrup PE, Kristiansen LC, Olsen A, Andersen KK, Elsass P, et al. Equity in the use of publicly subsidized psychotherapy among elderly Danish cancer patients – a register-based cohort study. Acta Oncol 2013;52:355–63. [19] Von Heymann-Horan AB, Dalton SO, Dziekanska A, Christensen J, Olsen MH, Ingelise Andersen, et al. Unmet needs of women with breast cancer during and after primary treatment: A prospective study in Denmark. Acta Oncol 2013;52:382–90. [20] Husson O, Haak HR, Buffart LM, Nieuwlaat W-A, Oranje WA, Mols F, et al. Health-related quality of life and
572 C. Johansen & S. O. Dalton disease specific symptoms in long-term thyroid cancer survivors: A study from the population-based PROFILES registry. Acta Oncol 2013;52:249–58. [21] Veloso AG, Sperling C, Holm LV, Nicolaisen A, Rottmann N, Thayssen S, et al. Unmet needs in cancer rehabilitation during the early cancer trajectory – a nationwide patient survey. Acta Oncol 2013;52:372–81. [22] Holm LV, Hansen DG, Larsen PV, Johansen C, Vedsted P, Bergholdt SH, et al. Social inequality in cancer rehabilitation: A population-based cohort study. Acta Oncol 2013;52: 410–22. [23] Bergholdt SH, Søn dergaard J, Larsen PV, Holm LV, Kragstrup J, Hansen DG. A randomised controlled trial to improve general practitioners’ services in cancer rehabilitation: Effects on general practitioners’ proactivity and on patients’ participation in rehabilitation activities. Acta Oncol 2013;52:400–9. [24] Høybye MT. Healing environments in cancer treatment and care. Relations of space and practice in hematological cancer treatment. Acta Oncol 2013;52:440–6. [25] Andersen SB, Bidstrup PE, Christensen J, Rottmann N, Olsen A, Tjønneland A, et al. Post-traumatic growth among women with breast cancer compared to breast cancer-free women. Acta Oncol 2013;52:345–54. [26] Johannesen-Henry CT, Deltour I, Bidstrup PE, Dalton SO, Johansen C. Associations between faith, distress and mental adjustment – a Danish survivorship study. Acta Oncol 2013;52:364–71. [27] Bidstrup PE, Dalton SO, Christensen J, Tjonneland A, Larsen SB, Karlsen RV, et al. Changes in body mass index and alcohol and tobacco consumption among breast cancer survivors and cancer-free women: A prospective study in the Danish Diet, Cancer and Health Cohort. Acta Oncol 2013;52:327–35. [28] Lyngholm CD, Christiansen PM, Damsgaard TE, Overgaard J. Long-term follow-up of late morbidity, cosmetic outcome and body image after breast conserving therapy. A study from the Danish Breast Cancer Cooperative Group (DBCG). Acta Oncol 2013;52:259–69. [29] Mortensen HR, Jensen K, Grau C. Aspiration pneumonia in patients treated with radiotherapy for head and neck cancer. Acta Oncol 2013;52:270–6. [30] Andersen SR, Würtzen H, Steding-Jessen M, Christensen J, Andersen KK, Flyger H, et al. Effect of mindfulness-based stress reduction on sleep quality: Results of a randomized trial among Danish breast cancer patients. Acta Oncol 2013;52:336–44. [31] Reidunsdatter R, Albrektsen G, Hjermstad MJ, Rannestad T, Oldervoll LM, Lundgren S. One-year course of fatigue after postoperative radiotherapy in Norwegian breast cancer patients – comparison to general population. Acta Oncol 2013;52:239–48. [32] Carlsen K, Jensen AJ, Rugulies R, Christensen J, Bidstrup PE, Johansen C, et al. Self-reported work ability in long-term breast cancer survivors. A population-based questionnaire study in Denmark. Acta Oncol 2013;52:423–9. [33] Kjær T, Bøje CR, Olsen MH, Overgaard J, Johansen J, Ibfelt E, et al. Affiliation to the work market after curative treatment of head-and-neck cancer: A population-based study from the DAHANCA database. Acta Oncol 2013;52:430–9. [34] Bøje CR, Dalton SO, Grønborg TK, Primdahl H, Kristensen CA, Andersen E, et al. The impact of comorbidity on outcome in 12 623 Danish head and neck cancer patients: A population-based study from the DAHANCA database. Acta Oncol 2013;52:285–93. [35] Baili P, Vicentini M, Tumino R, Vercelli M, Lorenzo M, Foschi R, et al. A method for differentiating cancer
prevalence according to health status, exemplified using a population-based sample of Italian colorectal cancer cases. Acta Oncol 2013;52:294–302. [36] Balducci L, Fossa SD. Rehabilitation of older cancer patients. Acta Oncol 2013;52:233–8. [37] Pagh A, Vedtofte P, Lynggaard CD, Rubek N, Lonka M, Johansen J, et al. The value of routine follow-up after treatment for head and neck cancer. A national survey from DAHANCA. Acta Oncol 2013;52:277–84. [38] Maher EJ. Managing the consequences of cancer treatment and the English National Cancer Survivorship initiative. Acta Oncol 2013;52:225–32. [39] Ewertz M Qourtrup C, Eckhoff L. Chemotherapy-induced peripheral neuropathy in patients treated with taxanes and platinum derivatives. Acta Oncol Epub 2015;54:587–91. [40] Kurita G, Sjøgren P. Pain management in cancer survivorship. Acta Oncol 2015;54:629–34. [41] Christensen JF, Bandak M, Campbell A, Jones LW, Højman P. Treatment-related cardiovascular late-effects and exercise training countermeasures in testicular germ cell cancer survivorship. Acta Oncol 2015;54:592–99. [42] Minton O, Foster J, Maher J. The role of behavioral modification and exercise in the management of cancer related fatigue to reduce its impact during and after cancer treatment. Acta Oncol 2015;54:581–86. [43] Lahart IA, Metsios GS, Nevill AM, Carmichael AR. Physical activity and risk of death and recurrence in breast cancer survivors; a systematic review and meta-analysis of epidemiological studies. Acta Oncol 2015;54:635–54. [44] Midtgaard J, Hammer NM, Andersen C, Larsen A, Bruun D-M, Jarden M. Cancer survivors’ experience of exercise-based cancer rehabilitation – a meta-synthesis of qualitative research. Acta Oncol 2015;54:609–17. [45] Salakari MRJ, Surakka T, Nurminen R, Pylkkänen L. Effects of rehabilitation among patients with advanced cancer: A systematic review. Acta Oncol 2015;54:618–28. [46] Warrington L, Absolom K, Velikova G. Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics. Acta Oncol 2015;54:600–08. [47] Kazak AE, Schneider S, DiDonato S, Pai ALH. Family psychosocial risk screening guided by the Pediatric Preventative Psychosocial Health Model (PPPHM) using the Psychosocial Assessment Tool (PAT). Acta Oncol 2015;54:574–80. [48] Schofield P, Chambers S. Effective, clinically feasible and sustainable: Key design features of psycho-educational and supportive care interventions to promote individualised selfmanagement in cancer care. Acta Oncol 2015;54:805–12. [49] Ross L, Rottmann N, Andersen KK, Hoybye MT, Johansen C, Dalton SO. Distress after a psychosocial cancer rehabilitation course. Main effects and effect modification in a randomised trial at 12 months of follow up. Acta Oncol Forthcoming 2015;54:735–42. [50] Würtzen H, Dalton SO, Christensen J, Andersen KK, Elsass P, Flyger HL, et al. Effect of mindfulness-based stress reduction on somatic symptoms, distress, mindfulness and spiritual wellbeing in women with breast cancer: Results of a randomized controlled trial. Acta Oncol 2015;54:712–19. [51] Bartels FR, Smith NS, Gørløv JS, Grufstedt HK, Nexø C, Kehlet H, et al. Optimized patient-trajectory for patients undergoing treatment with high-dose chemotherapy and autologous stem-cell transplantation. Acta Oncol 2015;54:750–58. [52] Gottlieb M, Marsaa K, Godtfredsen NS, Mellemgaard A. Prevalence and management of pulmonary comorbidity in patients with lung and head/neck cancer. Acta Oncol 2015;54:767–71.
[53] Winther JF, Kenborg L, Byrne J, Hjorth L, Kaatsch P, Kremer LCM, et al. Childhood cancer survivor cohorts in Europe. Acta Oncol 2015;54:655–68. [54] Bidstrup PE, Christensen J, Mertz BG, Rottmann N, Dalton SO, Johansen C. Trajectories of distress, anxiety, and depression among women with breast cancer: Looking beyond the mean. Acta Oncol 2015;54:789–96. [55] Kollberg KS, Waldenström A-C, Bergmark K, Dunberger G, Rossander A, Wilderäng U, et al. Reduced vaginal elasticity, reduced lubrication, and deep and superficial dyspareunia in irradiated gynecological cancer survivors. Acta Oncol 2015;54:772–79. [56] Andersen LT, Suppli NP, Dalton SO, Kroman N, Rosenberg J, Gögenur I. New use and chronic use of hypnotics after diagnosis with early breast cancer. A retrospective cohort study. Acta Oncol 2015;54:704–11. [57] Husson O, Vissers PAJ, Denollet J, Mols F. The role of personality in the course of health-related quality of life and disease-specific health status among colorectal cancer survivors; a prospective population-based study from the PROFILES registry. Acta Oncol 2015;54:669–77. [58] Hovaldt HB, Andersen I, Sandager M, Sperling C, Frederiksen K, Bidstrup PE, et al. The role of social position in anxiety and depressive symptoms among Danish cancer survivors. Acta Oncol 2015;54:693–703. [59] Husson O, Oerlemans S, Mols F, Schep G, van de Poll-Franse LV. High levels of physical activity are associated with lower levels of fatigue among lymphoma patients: Results from the longitudinal PROFILES registry. Acta Oncol 2015;54:678–84. [60] Schoormans D, Czene K, Hall P, Brandberg Y. The impact of co-morbidity on health-related quality of life
Survivorship – searching for new directions 573 in breast cancer survivors and controls. Acta Oncol 2015;54:727–34. [61] Møller PK, Tolstrup JS, Olsen MH, Dalton SO, Overgaard J, Johansen J. Predictors of continuous tobacco smoking in a clinical cohort study of Danish laryngeal cancer patients smoking before treated with radiotherapy. Acta Oncol 2015;54:685–92. [62] Pagh A, Grau C, Overgaard J. A longitudinal study of follow-up activities after curative treatment for head and neck cancer. Acta Oncol 2015;54:813–819. [63] Olsen MH, Bøje CR, Kjær T, Steding-Jessen M, Johansen C, Overgaard J, et al. Socioeconomic position and stage at diagnosis of head and neck cancer – a nationwide study from DAHANCA. Acta Oncol 2015;54:759–66. [64] Moustsen I, Larsen SB, Vibe-Petersen J, Trier K, Bidstrup PE, Andersen KK, et al. Social position and referral to rehabilitation among cancer patients. Acta Oncol 2015;54:720–26. [65] Larsen SB, Kroman N, Ibfelt EH, Christensen J, Tjønneland A, Dalton SO. Influence of metabolic indicators, smoking, alcohol and socioeconomic position on mortality after breast cancer. Acta Oncol 2015;54:780–88. [66] Dalton SO, Steding-Jessen M, Jakobsen E, Mellemgaard A, Østerlind K, Schüz J, et al. Socioeconomic position and survival after lung cancer: Influence of stage, treatment and comorbidity among Danish patients with lung cancer diagnosed in 2004–2010. Acta Oncol 2015;54:797–804. [67] Horsboel TA, Nielsen CV, Nielsen B, Andersen NT, de Thurah A. Wage-subsidised employment as a result of permanently reduced work capacity in a nationwide cohort of patients diagnosed with haematological malignancies. Acta Oncol 2015;54:743–49.
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EDITORIAL
Survivorship – searching for new directions Christoffer Johansen1,2 & Susanne Oksbjerg Dalton1 1Department
of Oncology, Copenhagen University Hospital, Copenhagen, Denmark and 2Survivorship, Danish Cancer Research Center, Copenhagen, Denmark In line with the steadily increasing number of cancer survivors, we are forced to take a critical view on our ongoing rehabilitation services and the ideas we promote with regard to life as a cancer survivor [1,2]. A cancer diagnosis is a break in the personal biography and furthermore the treatment might cause not only late effects directly related to the specific treatment received but also speed up the general ageing process thereby increasing the risk for age-related conditions leading to a generally shorter life expectancy [3–5]. Rehabilitation has a long history in medicine from the sanatoriums famously described in ‘The Magic Mountain’ by Thomas Mann [6] mainly applied as an idea about rest, warm baths and other passive strategies, e.g. treatments you receive waiting for healing. Today due to advances in early diagnostics and treatment, cancer survivors are also offered rehabilitation and often these services include physical activity and lifestyle advice about diet low in fat and high in vegetables as well as abstaining from smoking and alcohol consumption. Cancer survivors are enrolled in programs, which in principle offer interventions to reach goals in these lifestyle domains equivalent to the recommendations for the population at large (see, i.e. [7,8]). The recommendations for a healthy lifestyle are, however, not equally taken up by the general population. The higher educated, married and in other ways well-resourced groups in society are adapting health recommendations more readily than more disadvantaged groups even if the lifestyle changes might be appropriate. Probably – although very few studies have investigated this – this is the same or even more so, in cancer survivors. Despite this, we still see lifestyle intervention as a general response to the request from cancer patients, who wants to be guided in how they best can take
part in their own management of their treatment and rehabilitation. While the strategy is relevant, the fact remains that uptake of appropriate lifestyle habits in less resourced cancer patients will be lower. Perhaps we need to seriously rethink the way we recruit cancer patients, the content and/or format of the services we provide to initiate and support lifestyle changes in order to reach and support all cancer survivors. However, let us take another approach to the topic and ask what are the most frequent problems experienced by cancer survivors and if those lifestyle interventions actually address these problems? Pain, fatigue and depression are among the three most prevalent and debilitating symptoms among cancer patients across diagnoses [9]. For some survivors – especially those with a good prognosis – changes in lifestyle may improve prognosis, and relieve fatigue, pain and depression. Nevertheless pain and depression are mostly seen as medical problems. Interesting new evidence suggests that physical activity directly influences depression through muscle metabolism [10]. Depression is associated with elevated kynurenine levels, a tryptophan metabolite generated under stress and inflammatory conditions. Agudelo et al. [10] now reveal how PGC-1a1 overexpression in muscle mimics anti-depressant effects of exercise by promoting kynurenine aminotransferase expression, likely preventing kynurenine from crossing the blood brain barrier to disrupt neural plasticity and thus strengthening the emphasis with which such a generally sensible intervention as exercise should be promoted [10,11]. However, depressed, fatigued and pained persons in the middle of or in the aftermath of cancer treatment may face great barriers to starting and maintaining physical training, thus representing a sub-population of cancer survivors who need more specific interventions taking into
Correspondence: C. Johansen, Survivorship, Danish Cancer Research Center, Copenhagen, Denmark. E-mail: [email protected] (Received 10 March 2015; accepted 12 March 2015) ISSN 0284-186X print/ISSN 1651-226X online © 2015 Informa Healthcare DOI: 10.3109/0284186X.2015.1028764
570 C. Johansen & S. O. Dalton account that such late effects might affect motivation and adherence to a larger degree than in other groups. So our advice to survivors of cancer is actually based on what would address their needs or rather on what we think is the ‘good life’ based on cultural values, what is accessible in society and what we can imagine would benefit? When cancer patients enter the follow-up programs, which we commented on in relation to the European Cancer Rehabilitation & Survivorship Symposium in 2012 [2], the idea of follow-up is to detect recurrences and new primaries, but not much has been discussed about the content of these programs related to the problems cancer survivors face in a later phase compared to the immediate effects of the treatment itself. Not many, if any protocols for interventions aiming at preventing depression, treating fatigue or pain problems within the follow-up care context have been developed, tested in a randomized fashion and published. To the best of our knowledge no formal protocols actually exist, which in a detailed format explicitly describe the aim and content of follow-up to improve the patient’s ability to cope with the life as a cancer survivor. It is our view that this is needed in order to establish a more comprehensive follow-up program, which to a larger extent builds on patient-reported outcomes and self-management among cancer patients. We have no reason to believe that cancer survivors should not be able to observe the symptoms of disease in their body with the same degree of awareness as they had before they were diagnosed with cancer – in the same way that healthy citizens generally observe their own health condition. Our ECRS 2012 Symposium highlighted which type and amount of exercise cancer survivors would benefit from [12–15], if it all was possible to screen for psychological distress [16], presented studies, which investigated the need for rehabilitation and what cancer patients actually want to do when entering rehabilitation programs [17–23]. We highlighted hospital architecture and the association with healing [24]. One track of the program presented papers on effects of cancer treatment, such as post-traumatic growth [25], faith [26] and behavioral changes [27], late morbidity [28,29], sleep disturbances [30], fatigue [31] and difficulty in returning to work [32,33]. We also presented papers concerning the ageing population of cancer survivors [34–36], comprehensive cancer treatment, rehabilitation and follow-up [37,38]. All these aspects established the platform for the ECRS 2014 Symposium held in Copenhagen on 8–9 September 2014, as the 12th Acta Symposium. Almost 400 clinicians, researchers, and people working in the public sector with 45 oral presentations and 98 posters from 23 countries attended this
meeting. As is now a tradition this third ECRS symposium also offered workshops on the Sunday prior to the Symposium and 110 attended these nine workshops led by international capacities in each their field. We selected 28 papers for this issue based on novelty, and overall scientific content. The content of this issue reflects that the field of survivorship research is moving forward and more and more clinicians actually become engaged in research within this area. We present several comprehensive reviews of the evidence collated on important specific late effects as neuropathy [39] and pain [40] providing us with state-of-the-art and thorough discussion of implication for the clinic and further research. No less than four reviews concern physical activity in cancer survivors. Despite an extremely good prognosis after testicular germ cell cancer, increased risk of cardiovascular diseases, which under normal circumstances can be positively moderated by exercise; this has not been evaluated in long-term follow-up studies in this patient group [41]. In fatigue Minton et al. points to the missing link to translational research despite the bulk of research and calls for a scalable intervention, that can be integrated into all stages of the cancer care pathway across secondary and primary care addressing both acute and chronic persisting fatigue [42]. A systematic review and meta-analyses convincingly show a considerable reduction in both recurrences and death among breast cancer patients [43]. A meta-synthesis of qualitative studies on cancer survivors’ experience of participation in exercise-based rehabilitation state that healthcare personal and policy-makers must acknowledge and promote meaningfulness of exercise for the individual and provide new solutions in order to recruit and implement exercise interventions also among underserved patient populations [44]. In regard to fatigue a much needed review of rehabilitation in patients with advanced cancer and palliative care also points to positive effects on physical functioning and other quality of life domains by exercise [45]. In the call for stratified care pathways with an emphasis on supported self-management and shared care Warrington et al. discuss the value and challenges of incorporating patient-reported outcome measures (PROMs) and eHealth interventions into routine follow-up care drawing on their yearlong experience of developing electronic systems for capturing patient reported data in oncology settings [46]. Several papers concern interventions. In two papers, Kazak, editor of Health Psychology and Schofield and Chambers, respectively editors of Journal of Supportive Care in Cancer and European Journal of Cancer Care, each describe how one may develop theory based and manualized complex
Survivorship – searching for new directions 571
behavioral interventions that may push the field of survivorship clinical research forward and lead to implementation of focused interventions in clinical practice [47,48]. Studies of original research include reports of a psychosocial cancer rehabilitation course with no effect on distress [49] whereas mindfulness based stress reduction had no effect on somatic symptoms but on distress and mindfulness [50] among breast cancer survivors. Complex interventions addressing vulnerable patient populations must be carefully developed and tested and we present feasibility studies of exercise intervention in multiple myeloma patients undergoing autologous hematopoietic stem-cell transplantation [51] and optimized COPD treatment in lung and head and neck cancer patients [52] addressing important issues of prevalence, uptake and feasibility to inform appropriately powered trials. Winther et al. map the availability and characteristics of existing childhood cancer cohorts in Europe supporting joined efforts in research in these lowincidence disease groups with high survival and late effects rates [53]. Other original research papers include mapping of serious late effects and how these are associated with specific diseases and patient characteristics [54–62] and how patient and disease characteristics systematically are associated with access to care [63,64], mortality [65,66] or return to work [67]. We still miss the direction(s) of the ship of cancer survivors in order to identify the right direction, as so many aspects of life as a cancer survivor is unknown. We simply do not know the sea we fare on and the islands we will meet when we leave the harbor. In the search for drawing the geography of this white map more collaboration between researchers and clinicians is needed, more protocols, which actually try to address the need for systematic behavioral interventions linked to physiological and psychological understanding of the patient’s situation is needed. Mapping of the trajectory of immediate and later effects of treatment is needed in most cancer diseases. We look forward to the next ECRS symposium, September 2016 in Copenhagen. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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