Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL
Jennifer Reichek, Christine B. Weldon, Eugene Suh, Julia Rachel Trosman, Stacy D. Sanford, Dipti Dighe, Rosa Berardi, Kim Downing, Daniel K. Choi, Betty Roggenkamp, Natasha Pillay Smiley, Melanie Brown, Erika D Owen, Rani Ganesan
Background: In 2013, the Institute of Medicine report recommended that supportive oncology services be initiated at time of diagnosis. Providers of pediatric cancer care in the Chicagoland community, supported by The Coleman Foundation, sought to define areas for quality improvement of supportive oncology delivery to children. Methods: Focus groups and surveys with clinicians providing pediatric cancer care and supportive services at 14 sites were used to prioritize areas needing improvement. Results: 100% (14/14) of sites participated. Of the eligible sites, 6 were pediatric cancer treatment sites and 8 cancer care community organizations. Sites demonstrated consistent agreement for 8 of the 12 areas of focus for improvement. Over 50% of sites reported areas of focus (table) as important or very important. Conclusions: Sites identified the need for quality improvement in delivery of psychosocial, survivorship and palliative care for pediatric cancer patients. Survey results demonstrate a need for collaboration and efforts to guide care delivery improvement across sites.
Areas of Focus | Important or Very Important % | Would be nice % | Not Important % | Being done % |
---|---|---|---|---|
Standardize patient and family needs assessment (social, emotional, practical, family dynamics, financial, other) | 93 | 7 | 0 | 0 |
Formal guidance on when specialized palliative care may be useful for patients/families | 85 | 15 | 0 | 0 |
Palliative care specialty services in an outpatient setting (for outpatient consultations) | 85 | 7 | 0 | 8 |
Formalize / increase support for emotional / distress needs in outpatient setting | 71 | 29 | 0 | 0 |
Specific training (content) for all health professionals supporting pediatric cancer patients on palliative care, pain and symptom management | 71 | 21 | 0 | 8 |
Formal guidance on when hospice consult is appropriate | 65 | 28 | 0 | 7 |
Formalize / increase support for psychosocial needs in home setting | 50 | 50 | 0 | 0 |
Identify expected vs. not expected (possibly preventable) hospitalizations | 50 | 42 | 0 | 8 |
Explore why kids’ education needs are not met | 43 | 57 | 0 | 0 |
Access to cognitive rehab services for patients | 43 | 50 | 7 | 0 |
Patient / Family materials needed in languages other than English and Spanish | 36 | 50 | 14 | 0 |
Implement a standard clinical nutrition template for oncology outpatient visit | 35 | 50 | 15 | 0 |
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