Cancer Rehabilitation in Primary Health Care
Condition: Cancer Survivors; All Cancers
Study type: Interventional

Summary: 
      More than 70 % of Norwegian cancer patients become longtime survivors. Even if research
      documents that a large number strive with physical and psychosocial late effects from cancer
      and cancer treatment, cancer rehabilitation is not an integrated part of the cancer
      trajectory. Especially, there is a lack of knowledge and research based cancer rehabilitation
      in primary health care. In this study, the researchers pilot a cancer rehabilitation program
      in primary health care using a mixed method with a longitudinal pre-post design and focus
      group interviews. The overall goal is to study the program's feasibility and adherence, as
      well as outcomes on quality of life and participation. The project will provide new and
      important knowledge of cancer rehabilitation in primary health care, as well as important
      knowledge in on planning and designing a larger RCT study on the topic.
    

Detailed description: 
      This study focuses on piloting a cancer rehabilitation program for cancer survivors (18-70
      years of age), conducted in primary health care in a Norwegian municipality. In Norway, more
      than 70 % of all cancer patients will be long time survivors. However, research documents
      that cancer survivors are at increased risk for physical and psychosocial late effects with
      negative consequences for survival, long-time health and quality of life. Still, there is a
      huge gap between cancer survivors' documented late-effects and unmet needs and cancer
      rehabilitation interventions.

      Background

      Current cancer treatment is usually multimodal, hard and long-lasting, whereby many cancer
      patients experience physical and psychosocial late-effects and challenges. Some late-effects
      are life threatening, such as cancer relapse, new cancers, or development of chronical
      diseases. Other late effects influence the individual's health and quality of life
      negatively, as for example pain, lymphedema, gastrointestinal problems, memory, concentration
      and cognitive problems, neuropathies, anxiety and depression etc. In addition, cancer
      survivors report of social, economic and work related challenges. However, fatigue is the
      most distressing late-effect reported by cancer survivors, as it influences all areas of
      life, and is regarded as a strong and independent predictor for impaired quality of life.

      Even if Norwegians' right to rehabilitation is assigned by law and cancer rehabilitation is a
      national focus area, cancer rehabilitation is not an integrated part of the cancer
      trajectory. Research indicate that healthcare providers have limited knowledge of cancer
      survivors' multidimensional challenges and effective elements in cancer rehabilitation.
      Consequently, cancer survivors experience lack of information about late-effects, inadequate
      follow-up and lack of understanding related to their physical and psychosocial challenges, as
      well as multidimensional rehabilitation interventions. Based on the law, cancer
      rehabilitation preferably should be conducted in municipalities nearby the patient's home.
      However, the few existing programs are criticized for being random, fragmented, not research
      based, only including single elements, and that survivors have to find such offers for
      themselves. This highlights the need to developed and pilot evidence based cancer
      rehabilitation programs - especially in primary health care.

      Cancer rehabilitation is defined as processes that support cancer survivors to achieve
      maximal physical, psychological, social and work function within the frames created by cancer
      and cancer treatment. Consequently, cancer rehabilitation builds on a bio-psychosocial view
      of health and health promotion.

      Even if cancer rehabilitation is a relatively new research field, research shows that
      effective elements in cancer rehabilitation are based on physical activity and psychosocial
      interventions. Physical activity is the single element with most evidence, showing positive
      effects on physical fitness, general health, quality of life, fatigue and return to work for
      most cancers and ages. Guidelines for cancer survivors recommend moderate physical activity
      30 minutes a day, five days a week or more - and physical exercise as a combination of
      cardiovascular and strength exercise with gradual increase. Different types of psychosocial
      education have also shown effect on coping and stress reduction in cancer survivors. Such
      interventions, often called psychoeducation, most often include several elements such as
      education and illness specific information, emotional support, coping strategies, relaxing
      technics and discussions. Because cancer survivors challenges are multidimensional and
      individual, meeting the individual's need are crucial. Consequently, individual follow-up and
      goal setting are important means in promoting motivation, control and coping expectations
      that may promote positive physical and psychosocial health.Furthermore, research documents
      the importance of peer support in cancer rehabilitation, whereby peer support may promote
      positive changes, psychosocial function, empowerment and quality of life. New research
      indicates that a multidimensional approach in cancer rehabilitation that combines physical
      and psychosocial elements are more effective than single interventions related to physical
      function, quality of life, fatigue and distress. Research also indicate that positive effects
      of complex interventions are related to group rehabilitation after primary cancer treatment
      is finished, programs lasting more than three weeks, including several diagnosis and a
      multidisciplinary approach. Even if most of this research is conducted as in-rehabilitation
      in the specialist health care level, it seems evident that a complex rehabilitation program
      in primary healthcare should combine elements of physical activity, psychoeducation, peer
      support, goal setting and individual follow up for cancer survivors with different types of
      cancers after completion of primary cancer treatment.

      Study goal and research questions

      The overall goal of this pilot study is to increase the understanding and knowledge of cancer
      rehabilitation in primary health care by pilot testing a complex cancer rehabilitation
      program. Based on this, we have the following research questions:

        1. What characterize the psychosocial health and what is participants motivation to attend
           the program?

        2. How are the program's feasibility and adherence?

        3. In what degree do the participants achieve their goals and do this lead to increased
           participation?

        4. What are the participants' outcome on physical fitness?

        5. What are the participants' short (12 weeks) and long-term outcomes (6 and 12 months)
           related to quality of life, physical function, fatigue and mental health?

        6. What are the participants' experience of the rehabilitation process and what are the
           participants' recommendations for future programs?
    

Intervention name(s): Complex cancer rehabilitation
Intervention type(s): Other
Intervention description(s): The program is conducted as group rehabilitation, organized by four hour weekly over 12 weeks (approximately 50 hours) with 8-10 participants in each group over three years. The program is located in Askøy Municipality's 'Health Central' and conducted by a multidisciplinary team.
The content of the program is based on prior research and clinical experience, consisting of five elements:
Individual goal-setting
Physical activity (2 hours/week) focusing on balance/coordination, cardio and strength.
Psychoeducation: Five teaching sessions and discussions focusing on physical activity, fatigue and late-effects, nutrition, coping, social support and work/studies. In addition, two sessions (first and last) will also include next of kin.
Individual follow-up: Mandatory session at the start and end of the program, otherwise based on individual request and need.
Peer support.
Intervention model: Single Group Assignment
Intervention model description: A pilot study using mixed method with a longitudinal explanatory pre-post design, whereby quantitative data are collected longitudinal and qualitative data are collected in means of focus groups at the end of the rehabilitation program (after 12 weeks). Mixed methods design are reckoned to be a new and important research paradigm because the use of both quantitative and qualitative data may provide an increased insight in both processes and outcomes and thereby provide a more nuanced and complete understanding of the topic in focus, here, cancer rehabilitation.
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Cancer survivors; Complex rehabilitation; Mixed method; Adults; Longitudinal; Pilot; Feasibility; Adherence; Quality of life; Participation