Validation and feasibility of symptom management toolkit among cancer survivors and caregivers in India.

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Background: Cancer survivors receiving treatment or on follow-up face substantial burden of managing their symptoms. Many cancer survivors experience fatigue, pain, nausea/vomit and other symptoms of mild to moderate grade for which they visit hospitals. This increased burden already overburden healthcare facilities. We developed a Symptom Management Toolkit (SMT) to be used by cancer survivors or caregivers to manage symptoms by themselves. This study evaluates the validity and feasibility of SMT among survivors of solid carcinoma. Methods: a validation study was conducted among cancer survivors with diagnosis of solid malignancy who were currently receiving treatment or are on follow up. Participants aged 18-65 years with Eastern Cooperative Oncology Group (ECOG) Performance Score of 2 or less were included in the study. The socio-demographic data was collected through a structured questionnaire which include education, residence, work, medical, family history, smoking, and alcohol history was taken. A 13 symptoms-based SMT was provided to manage the symptoms at home. The symptoms were graded and their management instructions were provided. The content validity was assessed through review by expert. The construct validity was evaluated through group comparison and symptoms correlations. Results: A total of 65 participants were included in this study with 58.5% females and 41.5% being male. 43.1% of participants reported history of tobacco use while alcohol intake was reported in only 29.2% participants. 27.7% patients have hypertension, 23.1% diabetes mellitus as comorbidity. 10.8% participants reported family history of cancer. The study inculded 27.7% breast cancer, 18.5% oral cancer, 16.9% gynaecological cancer, 10.8% lung cancer and 26.2% other solid cancer cases. 63.1% survivors were receiving chemotherapy including targeted therapy, 18.5% chemoradiotherapy, 10.8% radiation therapy and 7.7% was on follow-up. The most common symptoms reported were fatigue (63.1%), pain (56.9%), nausea or vomiting (44.6%), and dry mouth (40%). The content validity shows strong expert agreement with calculation of content validity indices (item-level CVI 0.85–1.00; scale-level CVI 0.92). The criterion validity showed agreement between SMT-based patient self-grading and clinician assessment (κ = 0.70). the feasibility of SMT was high among survivors. Around 86.2% of survivors and their caregivers were able to understand easily the instruction provided. The adherence to the SMT was also higher (73.4%). 64.6% of survivors reported improved symptom management through use of SMT. There were 13.8% decrease in hospital visit after SMT use (24/65 vs 15/65 visit before and during SMT use). Conclusions: The feasibility and high acceptability of SMT can improve symptom management and reduce hospital visits. The SMT can be used as self-management tool to reduce the unscheduled visits to the hospitals.