Exploration of pain-related quality of life in adolescents with cancer
Study explores specific ways in which pain affects quality of life of adolescents with cancer.
Cancer management in adolescents should aim to prevent death and improve quality of life. Pain is an important determinant of quality of life (Merlijn et al 2006) and is the most common symptom experienced by adolescents with leukaemia, lymphoma and solid tumours (Goldman et al 2006).
The aim of this study was to explore specific ways in which pain affects quality of life of adolescents with cancer.
A narrative literature review was conducted to identify qualitative research that examined the impact of pain on quality of life in adolescents with cancer. This was followed by an exploratory qualitative study among adolescents with cancer treated at a regional centre.
Medline and the CINAHL databases were searched. The quality of included studies was assessed using the Critical Appraisal Skills Programme checklist.
We conducted a phenomenological study to explore experiences of adolescents with cancer-related pain, who were being treated in a regional oncology unit at a children’s hospital. Purposive sampling was used to identify eligible adolescents. Data were collected using semi-structured recorded interviews. Questions were established following the review of literature, and from participant responses during interviews. Emerging themes were coded and analysed through thematic analysis. Results were triangulated through researcher-participant corroboration, responses were verified by participants during and after the interview, and peer debriefing was used to categorise and code data. The transcribed data were independently analysed by two researchers.
For the literature review, 52 abstracts were identified, of which 46 were excluded because they were conducted in adults, focused on symptoms other than pain, or measured quality of life in chronic diseases other than cancer. The six included studies found that pain affects emotional well-being and functional status, but there was little work on the ways cancer affects quality of life.
For the qualitative study, we identified 29 potential participants, of whom six were included (12 declined, and nine were excluded because they had learning disabilities, were experiencing pain not related to cancer, or were too ill). The six participants (four girls and two boys, aged between 13 and 16 years), were being treated for various cancer diagnoses (acute leukaemia [n=3], osteosarcoma [n=2], and Ewing’s sarcoma [n=1]), and all received strong opioid analgesia in the past three months.
From our interviews the main new finding was that suffering from severe pain, or needing opioid medication, are the major factors that affect adolescents’ perceptions of their disease control. Worsening pain made them feel they were dying. We also identified that adverse effects and stigma associated with strong opioid medication affected quality of life. All participants experienced unpleasant side effects from their analgesia and this led to poor compliance.
One useful aspect of this methodology was that a journal was kept throughout the study. Diary reflection helped refine and evolve the methods efficiently and effectively.
Implications for practice
We found adolescents with cancer perceive pain to be a marker of disease progression, and that they have concerns about side effects and stigma associated with strong opioid medications.
Counselling adolescents about these issues, before an analgesic regime is started, may help them adjust to a distressing aspect of their illness, and the need to take medications about which they worry.
- Merlijn VP, Hunfeld JA, Van Der Woulden JC et al (2006) Factors relating to the quality of life in adolescents with chronic pain. Clinical Journal of Pain. 22, 3, 306-315.
- Goldman A, Hewitt M, Collins GS et al (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom children’s cancer study group/paediatric oncology nurses forum survey. Pediatrics. 117, 6, e1179.
Stephanie Sinha is clinical nurse specialist in pain and sedation at Alder Hey Children’s Foundation Trust, Liverpool. Written on behalf of the RCN’s Research in Child Health community