Journal of Cancer Survivorship: Research and Practice

Egeler, M. D.; Boomstra, E.; Rohaan, M. W.; Van den Heuvel, N. M. J.; Fraterman, I.; Delfos, M.; van de Poll-Franse, L. V.; Borch, T. H.; Svane, I. M.; Haanen, J. B. A. G.; Retèl, V. P.; Boekhout, A. H.

doi: 10.1007/s11764-023-01452-8pmid: 37606816

PurposePatients with advanced melanoma refractory to first-line treatment have a need for effective second-line treatment options. A recent phase 3 trial showed promising results for adoptive cell therapy with tumor-infiltrating lymphocytes (TILs) as second-line therapy in patients with advanced melanoma. However, it remains unknown how patients and their partners experience TIL therapy, which is key to evaluate and improve the quality of care.MethodsSemi-structured interviews about the experience of TIL therapy were conducted with patients with advanced melanoma and their partners 2–4 weeks post-treatment (short term) and >6 months after treatment (long term).ResultsIn total, 25 interviews were conducted with advanced melanoma patients treated with TIL (n=13) and their partners (n=12), with the majority being short-term interviews (n=17). Overall, patients and partners experienced TIL therapy as intense (uncertainty of successful TIL culture, multiple treatment-related toxicities, and extensive hospitalization). Patients and partners with young children or other caregiving responsibilities encountered the most challenges during TIL therapy. All patients, however, reported a recovery of all treatment-related toxicities within 2–4 weeks (except fatigue).ConclusionClinical data justify the role of TIL therapy in the treatment of advanced melanoma. With the distinct nature of TIL therapy compared to the current standard of care, we have provided patient-centered recommendations that will further enhance the quality of TIL therapy.Implications for Cancer SurvivorsAs more patients with advanced melanoma are expected to receive TIL therapy in the future, our findings could be incorporated into survivorship care plans for this novel group of advanced melanoma survivors treated with TIL.

Mullan, Lauren J.; Blackburn, Nicole E.; Gracey, Jackie; Dunwoody, Lynn; Lorimer, Jill; Semple, Cherith J.

doi: 10.1007/s11764-023-01453-7pmid: 37648875

PurposePatients living with head and neck lymphoedema (HNL) after completion of head and neck cancer (HNC) often can experience long-term functional challenges and overall poorer health-related quality of life (HRQOL). This systematic review aims to explore components of effective HNL interventions through identification and synthesising literature on existing HNL management interventions.MethodsFive electronic databases (MEDLINE via Ovid and PubMed, CINAHL, CENTRAL, and Scopus) were systematically searched using Medical Subject Headings and free text, as well as citation tracking and Google Scholar for grey literature.ResultsA total of 1910 studies were screened, with 12 studies meeting the inclusion criteria. Findings indicated vast heterogeneity within HNL interventions. Patients’ adherence to intervention strategies was reported as low and partially adhered to, particularly at home. This impacted on function domains and overall HRQOL during the post-treatment HNC phase, as well as further increasing the demands placed on healthcare professionals.ConclusionsSynthesis of the research findings highlighted a need to provide and educate patients with individualised HNL self-management intervention strategies. Promoting adherence was reported as being essential, with self-efficacy and behaviour change techniques being emphasised as a critical element to enhance motivation and therefore effective intervention delivery. Further work is important to address barriers to adherence and promote both motivation and behaviour change, to develop individualised self-management interventions for this cancer population.Implications for Cancer SurvivorsThe findings from this systematic review will provide guidance in the development and delivery of individualised self-management HNL interventions for patients who have completed HNC treatment.

Graboyes, Evan M.; Kistner-Griffin, Emily; Hill, Elizabeth G.; Maurer, Stacey; Balliet, Wendy; Williams, Amy M.; Padgett, Lynne; Yan, Flora; Rush, Angie; Johnson, Brad; McLeod, Taylor; Dahne, Jennifer; Ruggiero, Kenneth J.; Sterba, Katherine R.

Weemaes, Anouk T. R.; Sieben, Judith M.; Beelen, Milou; Mulder, Louisa T. M. A.; Lenssen, Antoine F.

doi: 10.1007/s11764-023-01455-5pmid: 37733263

PurposeThe purpose of the study was to investigate perceived determinants of physical activity (PA) maintenance following supervised exercise oncology rehabilitation and the acceptability of a remote coaching intervention during this period.MethodsA phenomenological qualitative study with semi-structured interviews was conducted. Nineteen participants (16 women, 3 men) were recruited from the intervention (n = 12) and control group (n = 7) of a randomized controlled trial on the effectiveness of remote coaching following hospital-based, supervised exercise oncology rehabilitation. Participants in the intervention group received a 6-month remote coaching intervention after completing the exercise program, aimed at stimulating PA maintenance. The interviews were based on the Capability, Opportunity, and Motivation model of Behaviour (COM-B model) and the framework of acceptability (TFA) and were coded using template analysis.ResultsKey themes regarding determinants of PA maintenance were self-efficacy, PA habits, accountability, physical complaints, and facilities. Remote coaching was perceived acceptable because it stimulated PA maintenance by offering a source of structure and social support and thereby increased accountability. Moreover, it improved confidence to perform PA, leading to increased levels of self-efficacy. The remote nature of the intervention was perceived as convenient by some of the participants, while others would have preferred additional physical appointments.ConclusionsCancer survivors considered remote coaching acceptable to stimulate PA maintenance following supervised rehabilitation. Interventions should focus on increasing accountability, self-efficacy, forming habits, and helping cancer survivors to overcome barriers.Implications for Cancer SurvivorsThe ability to maintain PA beyond supervised exercise oncology programs depends on many determinants. Remote coaching interventions have potential to target individually relevant determinants following exercise programs in cancer survivors.

Strebel, Sven; Baust, Katja; Grabow, Desiree; Byrne, Julianne; Langer, Thorsten; am Zehnhoff-Dinnesen, Antoinette; Kuonen, Rahel; Weiss, Annette; Kepak, Tomas; Kruseova, Jarmila; Berger, Claire; Calaminus, Gabriele; Sommer, Grit; Kuehni, Claudia E.; ,

doi: 10.1007/s11764-023-01456-4pmid:

Diggens, Justine; Bullen, Dani; Maccora, Jordan; Wiley, Joshua F.; Ellen, Steve; Goldin, Jeremy; Jefford, Michael; Hickey, Martha; Ftanou, Maria

doi: 10.1007/s11764-023-01457-3pmid: 37751126

PurposeThis study aimed to evaluate the feasibility and clinical efficacy of the Can-Sleep stepped-care intervention for people with cancer-related sleep disturbance.MethodsA total of 147 individuals with cancer were screened. Participants who reported sleep disturbances and were at low-moderate risk for intrinsic sleep abnormalities were given self-managed cognitive behavioral therapy for insomnia (SMCBT-I). Those reporting sleep disturbance and scoring at high risk of intrinsic sleep abnormalities (i.e., restless leg syndrome and obstructive sleep apnoea) were referred to a specialist sleep clinic. In both groups, participants received a stepped-up group CBT-I intervention (GCBT-I) if they continued to report sleep disturbance following SMCBT-I or the specialist sleep clinic.ResultsOverall, 87 participants reported sleep disturbance or screened at risk for intrinsic sleep abnormality. Thirty-four were referred to a specialist sleep clinic, and of the 17 who declined this referral, 14 were rereferred to SMCBT-I. In total, 62 participants were referred to SMCBT-I, and 56 commenced SMCBT-I. At post-intervention, the SMCBT-I group showed a significant decline in insomnia symptoms (p < .001, d = 1.01). Five participants who reported sleep disturbance after SMCBT-I and/or the specialist sleep clinic, accepted GCBT-I. Those who received the GCBT-I showed a significant reduction in insomnia symptoms (p < .01, d = 3.13).ConclusionsThis study demonstrates the feasibility and efficacy of a stepped-care intervention for sleep disturbances in people with cancer.Implications for cancer survivorsA stepped-care intervention for sleep disturbance is a feasible and potentially effective method of addressing a significant and unmet patient need.

Ekels, Afke; Oerlemans, Simone; Schagen, Sanne B.; Issa, Djamila E.; Thielen, Noortje; Nijziel, Marten R.; van der Poel, Marjolein W. M.; Arts, Lindy P. J.; Posthuma, Eduardus F. M.; van de Poll-Franse, Lonneke V.

doi:

Rasmussen, Linda Aagaard; Jensen, Henry; Pedersen, Anette Fischer; Vedsted, Peter

doi: 10.1007/s11764-023-01459-1pmid: 37704918

PurposeTo investigate the association between fear of cancer recurrence (FCR) and healthcare use in general practice among cancer survivors.MethodsWe linked nationwide register data to survey data on FCR in cancer survivors at 2.5 years after a cancer diagnosis. Multiple regression models were used to analyse the association between high FCR level and quartiles of healthcare use at 18–30 months before the cancer diagnosis (habitual healthcare use) and between high FCR level and healthcare use at 18–30 months after the cancer diagnosis (survivorship healthcare use).ResultsWe included 1538 cancer survivors in the study. High habitual healthcare use was associated with a high level of FCR (odds ratio = 2.07 (95% confidence interval (CI): 1.36–3.15)) for the 4th quartile of healthcare use compared to the 1st quartile. A high FCR score was also associated with higher healthcare use during cancer survivorship (incidence rate ratio (IRR) = 1.26 (95% CI: 1.14–1.40)). This association remained statistically significant when adjusting for habitual healthcare use (IRR = 1.20 (95% CI: 1.09–1.33)).ConclusionHigh healthcare use before the cancer diagnosis was associated with high FCR during survivorship. This indicates that FCR is partly explained by a general (pre-diagnostic) health concern. High FCR predicted high healthcare use during cancer survivorship, even when adjusting for habitual healthcare use.Implications for Cancer SurvivorsOur results suggest that FCR in cancer survivors is triggered by a general high level of health concern, and the cancer diagnosis may further exacerbate this concern.

Quick, Allison M.; McLaughlin, Eric; Krok Schoen, Jessica L.; Felix, Ashley S.; Presley, Carolyn J.; Cespedes Feliciano, Elizabeth M.; Shadyab, Aladdin H.; Jung, Su Yon; Luo, Juhua; King, Jennifer J.; Rapp, Stephen R.; Werts, Samantha; Chlebowski, Rowan T.; Naughton, Michelle;

Beeler, Dori; Christensen, Vivian; Parker, Kellee; Cottrell, Erika

doi: 10.1007/s11764-023-01461-7pmid: 37801177

PurposeUnderstanding the lived experiences of childhood cancer caregivers can guide the development of effective psychosocial models of care. We conducted this qualitative study to understand triggers that impact the mental health, quality of life, and mental health supportive care needs of caregivers.MethodsA maximum variation sampling strategy was used to recruit study participants for semi-structured interviews. Using a grounded theory approach, transcripts were independently dual-coded using inductive thematic analysis. We conducted a secondary thematic analysis emphasizing the impact of pediatric oncology on caregiver mental health.ResultsOur findings highlight caregiver experiences connected to their child’s appearance, quality of life, or change in behavior. Caregivers reported the need to transition between the role of nurturer and protector and simultaneously be part of the care team, which increased trauma for caregivers and their children. Caregivers noted that the hardest part of being a caregiver is witnessing, participating, and forcing the child to comply with cancer treatment. Caregivers were left wishing there had been more support for these situations.ConclusionOur findings reveal real-world experiences that caregivers view as among the most stressful during their child’s cancer journey. These events provide insight into the nuanced and most difficult experiences from the caregiver perspective in which emotional support services would be most useful. These insights will inform a future model for mental healthcare.Implications for Cancer SurvivorsCaregivers’ treatment-related stress is associated with the quality of life of pediatric cancer patients. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines may positively impact the caregiver–child relationship long into survivorship.  Children’s and their caregivers’ treatment-related stress are indelibly connected to the quality of life concerns throughout the cancer journey. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines will positively impact the caregiver–child relationship long into survivorship.