Complexity of care and strategies of self-management in patients with colorectal cancer

Abstract

PurposeGiven the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity.MethodsA qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis.ResultsThe results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) “complexity of disease”, 2) “complexity of care”, and 3) “complexity of treatment-related data”. To deal with these multifaceted situations, patients have established several individual strategies. These strategies are “proactive demanding” (eg, to get support and guidance or a meaningful dialog with the doctor), “proactive behavior” (eg, preparation of visits), and “proactive data management” (eg, in terms of merging treatment-related data and to disseminate these to their health care providers).ConclusionPatients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient’s life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).

Health professionals’ perceptions of colorectal cancer patients’ treatment burden and their supportive work to ameliorate the burden – a qualitative study

“…The participants expressed concerns for patients who received an ostomy, noting that the ostomy represents substantial distress and a major treatment burden for patients. Managing an ostomy is among the consequences of CRC treatment adding to the complexity of the disease and requiring a proactive patient role [ 14 ]. According to Näsvall et al [ 41 ], in rectal cancer patients, an ostomy is found to affect quality of life through decreased physical and mental health functioning, increased fatigue and a distorted body image.…”

“…Accordingly, patients with CRC must deal with many dimensions of burden during their treatment trajectory and must balance their demands and their capacity to self-manage [ 14 ]. This burden of treatment can be described as the extra work that health professionals (HPs) delegate to patients to live well with their chronic illness [ 15 , 16 ].…”

Health care provider and patient preparedness for alternative colorectal cancer follow-up; a review

“…All 10 studies investigating the value of SCPs were affirmative [25,76e84]. Most patients saw the benefits of SCPs and endorsed their addition to usual care; they felt empowered about having a plan that includes psychosocial elements [77,81,84]. GPs felt that SCPs were useful and enhanced their understanding of cancer diagnosis and treatment [76,83].…”

Health professionals’ perceptions of colorectal cancer patients’ treatment burden and their supportive work to ameliorate the burden - a qualitative study

“…The participants expressed concerns for patients who received an ostomy, noting that the ostomy represents substantial distress and a major treatment burden for patients. Managing an ostomy is among the consequences of CRC treatment adding to the complexity of the disease and requiring a proactive patient role [9]. According to Näsvall et al [38], in rectal cancer patients, an ostomy is found to affect quality of life through decreased physical and mental health functioning, increased fatigue and a distorted body image.…”

“…Accordingly, patients with CRC must deal with many dimensions of burden during their treatment trajectory and must balance their demands and their capacity to self-manage [9]. This burden of treatment can be described as the extra work that health professionals (HPs) delegate to patients to live well with their chronic illness [10][11].…”