The ASEAN Costs in Oncology (ACTION) Study had previously reported high levels of psychological distress among cancer survivors in the region. We aimed to gain an in-depth understanding of the (unmet) needs in Asian patients living with cancer in a middle-income setting.
Twenty focus group discussions were conducted among patients with breast, cervical, prostate or colorectal cancer (N = 102) at five tertiary Malaysian hospitals (public, academic, private). Thematic analysis was performed.
Seven themes were identified. (1) Information; participants emphasized the need for physicians to provide detailed information on latest treatment options. Besides medical advice, informational needs on diet, and traditional and complementary medicine remained unmet.”(2) Psychosocial; “coping with cancer diagnosis” and “fear of recurrence” were major issues. The need for “support groups” as a source of informational and psychological support was raised. It was also stressed that increased “public awareness” was needed to circumvent the stigma against cancer survivors. (3) Physical; patients stressed on concerns regarding “side effects of treatment”, including “fertility”, “sexuality” and “sexual function”. (4) Practical support; major unmet needs in “transportation and parking” and “comfortable facilities” in hospitals were reported. (5) Financial; The burden of “out-of-pocket” expenses, “paying first then claim” and the costs of “essential items” e.g. breast prosthesis, colostomy bags were highlighted. (6) Systemic; Issues with “accessibility and eligibility of financial aid” were frustrating to needy patients. The need for an “integrated care system” where different departments work together to avoid repeated tests, and consolidate hospital appointments into the same day was repeatedly raised. (7) Employment; Patients needed “job security” and “cancer leave”. Lack of work-related flexibility, and discrimination at workplace were voiced out.
There seems to be an overarching theme of limited patient-centered healthcare during the survivorship period in Asian settings. These findings underscore the need for holistic cancer survivorship services that address wider aspects of wellbeing including the urgent need for patient navigation programs.
The authors.
Pharmaceutical Association of Malaysia.
N. Bhoo-Pathy: Research grant / Funding (institution): Pharmaceutical Association of Malaysia. All other authors have declared no conflicts of interest.