Delivery of services to childhood cancer survivors in India: A national survey

Rathore, Vatsna; Taluja, Ankit; Arora, Pallak; Bagai, Poonam; Kapoor, Gauri; Seth, Rachna; Arora, Ramandeep Singh

doi:10.4103/ijmpo.ijmpo_6_20

Cited by 4 publications

(17 citation statements)

References 14 publications

(15 reference statements)

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“…2,15 A recent audit at our clinic found that the major causes for attrition to follow-up include gaps in awareness, financial toxicity, and "social stigma," similar to results of a nationwide survey. 12,16 At registration into the ACT Clinic, the gender ratio of 2.5:1 (male preponderant), while skewed, was similar to that at initial cancer diagnosis at our center. However, several female survivors discontinue clinic visits into adulthood and marriage.…”

Section: The Need To Recognize the Unique Spectrum Of Late Effects In...mentioning

confidence: 57%

“…7 However, a national survey to assess delivery of services to CCS found poor availability of extended service providers such as endocrinologists and psychologists. 12 Transitioning from Acute Care to Survivorship Care: Catch them Early, and Catch them Young One of the major challenges that we have faced is to streamline and increase recruitment to the ACT Clinic in our highvolume center. Children who complete treatment are followed up in the routine outpatient department until they are eligible to enroll in the ACT Clinic, that is, 5 years from start of treatment and 2 years from completion of treatment.…”

Section: The Need To Recognize the Unique Spectrum Of Late Effects In...mentioning

confidence: 99%

“…7 However, a national survey to assess delivery of services to CCS found poor availability of extended service providers such as endocrinologists and psychologists. 12…”

Section: Introductionmentioning

confidence: 99%

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The Care of Childhood Cancer Survivors in India: Challenges and Solutions

Prasad

Goswami

Kurkure

2023

Indian J Med Paediatr Oncol

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Purpose We describe the challenges faced and lessons learnt over three decades of a childhood cancer survivorship program in India. Methods We provide a descriptive analysis of the challenges and barriers faced in running this program, our strategies in management, and detail the stages of development of holistic support system. Results The profile of late effects in our cohort of survivors is notable for the high prevalence of psychosocial issues and metabolic syndrome. Major difficulties faced were transitioning of patients to survivorship care and attrition to follow-up, which were overcome to an extent by ensuring constant communication/rapport-building, updated databases, and peer support groups. Collaborations with nonprofit organizations and other donors have enabled financial, psychosocial, educational, and vocational rehabilitation. Conclusions It is feasible to establish and sustain a survivorship program in a large-volume center in low- and medium-income country. Understanding the unique spectrum of late effects and establishing a holistic support system go a long way in ensuring the long-term physical and mental health and psychosocial concerns of childhood cancer survivors. Decentralization, development of a strong national networks, capacity building, and incorporation of sustainable technology should be priorities in survivorship care.

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Section: The Need To Recognize the Unique Spectrum Of Late Effects In...mentioning

confidence: 57%

Section: The Need To Recognize the Unique Spectrum Of Late Effects In...mentioning

confidence: 99%

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The Care of Childhood Cancer Survivors in India: Challenges and Solutions

Prasad

Goswami

Kurkure

2023

Indian J Med Paediatr Oncol

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“…Such collaborations with nonprofit organizations are perceived to represent a means to extend access to survivorship care in centers with limited or no special services and resources, which represents a large portion of pediatric cancer centers in India. 36 …”

Section: Resultsmentioning

confidence: 99%

Care Models and Barriers to Long-Term Follow-Up Care Among Childhood Cancer Survivors and Health Care Providers in Asia: A Literature Review

Cai,

Cheung,

Hudson

2024

JCO Glob Oncol

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Most available data evaluating childhood cancer survivorship care focus on the experiences of high-income Western countries, whereas data from Asian countries are limited. To address this knowledge deficit, we aimed to characterize survivorship care models and barriers to participation in long-term follow-up (LTFU) care among childhood cancer survivors (CCSs) and health care providers in Asian countries. Twenty-four studies were identified. Most institutions in China and Turkey adopt the oncology specialist care model, whereas in Japan, India, Singapore, and South Korea, after completion of therapy LTFU programs are available in some institutions. In terms of survivor barriers, findings highlight the need for comprehensive age-appropriate education and support and personalized approaches in addressing individual preferences and challenges during survivorship. Health care professionals need education about potential late effects of cancer treatment, recommended guidance for health surveillance and follow-up care, and their role in facilitating the transition from pediatric to adult-focused care. To optimize the delivery of cancer survivorship care, efforts are needed to increase patient and family awareness about the purpose and potential benefits of LTFU care, improve provider education and training, and promote policy change to ensure that CCSs have access to essential services and resources to optimize quality of survival.

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“… 12 International studies on medical undergraduates and oncology fellows have reported a lack of knowledge and a high prevalence of misconceptions regarding key cancer survivorship issues. 13 However, most healthcare providers expressed interest in knowing more, and small interventions in education have been shown to bring objective success. 14 Greater confidence in the primary care providers’ abilities to address issues faced by CCS is believed to be a significant facilitator for those survivors seeking care for health issues that emerge.…”

Section: Introductionmentioning

confidence: 99%

Knowledge and attitude on childhood cancer survivorship among healthcare trainees: a multicentre study from India

Grewal,

Bansal,

Mittal

et al. 2024

Fam Med Com Health

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BackgroundThe proportion of childhood cancer survivors (CCS) in low/middle-income countries (LMICs) is rising. CCS often develop several physical and psycho-social long-term adverse effects, with unique healthcare needs. Primary healthcare providers (primary care physicians (PCPs)), especially in LMICs, are often not equipped to handle survivorship care. This study aimed to assess knowledge, and attitude among trainee healthcare providers concerning major issues of paediatric survivorship care.MethodsA multi-centre, cross-sectional, questionnaire-based study was conducted among nursing and medical undergraduate students, and postgraduate medical residents across three tertiary-care teaching hospitals in India—All India Institute of Medical Sciences, New Delhi; Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry; and Maulana Azad Medical College, New Delhi. A questionnaire with total of 24 questions (14 knowledge-based and 10 attitude-based) was finalised after validation by expert review and piloting. The major domains covered in the questionnaire included knowledge and attitude regarding long-term adverse effects and psychosocial, employment-related issues faced by the survivors. It was administered to the study participants electronically. The knowledge-based questions had true/false responses (scored as 0 or 1 if incorrect or correct, respectively). Attitude-based questions were scored as 5-point Likert scale.ResultsTotal 898 responses were collected (median age: 21 years, 64% (576/898) female). Among the respondents, 44% were undergraduate medical students, 42% were nursing students and 14% were postgraduate medical residents. The mean (SD) of knowledge score was 8.72 (2.04) (out of 14). On multivariable analysis, only discipline of training predicted knowledge scores regarding survivorship care. Postgraduate medical residents (9.08) as well as undergraduate medical students (8.85), had significantly higher mean knowledge scores than nursing students (8.47) (p=0.004).Two questions were answered incorrectly by the majority; children and siblings of CCS need additional genetic screening (79% incorrectly answered true), and CCS face intimacy issues in relation to normal sexual functioning (59% incorrectly answered false).Nearly half (48%) of respondents believed that their knowledge of cancer survivorship issues was inadequate. Majority of respondents (84%) suggested that oncologists should handle long-term survivorship care rather than PCPs.ConclusionTrainee healthcare providers in India reported inadequate knowledge regarding survivorship care. Improving awareness by incorporating survivorship in teaching curriculum is imperative to equip future PCPs to provide survivorship care across the country.

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Delivery of services to childhood cancer survivors in India: A national survey

Cited by 4 publications

References 14 publications

The Care of Childhood Cancer Survivors in India: Challenges and Solutions

The Care of Childhood Cancer Survivors in India: Challenges and Solutions

Care Models and Barriers to Long-Term Follow-Up Care Among Childhood Cancer Survivors and Health Care Providers in Asia: A Literature Review

Knowledge and attitude on childhood cancer survivorship among healthcare trainees: a multicentre study from India

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