Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient-physician communication, and the quality of care for hematology/oncology patients.

/pdf/patient-reported-outcomes-in-clinical-practice-24ag8k0kkq.pdf

Patient-reported outcomes in clinical practice.

Background
Complications related to sickle cell disease (SCD) result in significant declines in health-related quality of life (HRQOL). While hydroxyurea reduces SCD complications, adherence remains suboptimal. The study's objectives were to assess the feasibility of Internet-based electronic assessment of HRQOL in SCD clinic and to examine the relationship between HRQOL and hydroxyurea adherence in adolescents and young adults (AYAs) with SCD.

Procedure
A cross-sectional survey was administered on tablets to 34 AYAs (12–22 years old) in a SCD clinic from January through December 2015. Study measures included Patient Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive testing and ©Modified Morisky Adherence Scale 8-items (©MMAS-8).

Results
Participants (59% male, 91% Black) had median age of 13.5 (range 12–18) years. Ninety-one percent completed PROMIS® measures electronically in the clinic, meeting our feasibility criterion of ≥85% completion rate. ©MMAS-8 scores positively correlated with fetal hemoglobin (HbF) (rs = 0.34, P = 0.04) and mean corpuscular volume (MCV) (rs = 0.42, P = 0.01) and inversely correlated with fatigue (rs = –0.45, P = 0.01), depression (rs = –0.3, P = 0.08), and social isolation (rs = –0.78, P = 0.02). Low ©MMAS-8 scores, indicating poor adherence, were associated with worse fatigue (P = 0.001) and trended toward significance for pain (P = 0.07) and depression (P = 0.06). Homozygous hemoglobin S disease patients with low HbF (<16%) had worse social isolation (P = 0.04) and those with low MCV (<102 fl) reported worse fatigue (P = 0.001), pain (P = 0.01), mobility (P = 0.01), and social isolation (P = 0.04).

Conclusions
HRQOL assessment in the SCD clinic is feasible. SCD patients with low hydroxyurea adherence and/or low HbF or MCV levels had worse HRQOL scores, particularly fatigue. Future prospective studies examining the relationship between HRQOL and hydroxyurea adherence are warranted.

Health‐related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease

OBJECTIVE Youth with chronic illness are at higher risk for psychosocial difficulties, leading to a call for screening via patient-reported outcomes (PROs). The purpose of the current review is to summarize PRO implementation in pediatric medical specialty settings. A literature review of PRO implementation in these settings, conceptual issues, value and approach, legal and ethical concerns, as well as a case example of PROA in type 1 diabetes are presented. METHODS A systematic review was conducted to identify relevant articles published since the most recent Journal of Pediatric Psychology Special Issue on Evidence-Based Assessment in Pediatric Psychology (2008). RESULTS Thirty-two articles were identified and reviewed. The majority of studies reported that PROA was feasible, did not disrupt clinic flow, identified psychosocial issues warranting intervention, and was acceptable to families and providers. Response to elevated scores and impact on behavioral health referrals varied. CONCLUSION While many evidenced-based assessment measures are well-validated within pediatric chronic illness groups, the literature regarding implementation of PROs is still emerging. Research findings are promising, with PROs being feasible, acceptable, and leading to increased discussion of psychosocial issues when integrated into pediatric medical settings. Additional research is needed to evaluate the longitudinal impact of PROs and the optimal manner of responding to assessment data, particularly when clinically-elevated. Ultimately, identifying psychosocial issues in pediatric medical settings can promote optimal health and well-being of youth with chronic illness and their families.

Patient-Reported and Parent Proxy-Reported Outcomes in Pediatric Medical Specialty Clinical Settings: A Systematic Review of Implementation.

Problem Identification: To date, there is limited study of the end of treatment (EOT) transition experiences and needs of children/adolescents with cancer and their parents.Literature Search: A sys...

The end of cancer treatment experience for children, adolescents, and their parents: A systematic review of the literature.

Aim: To analyze the effect of a parenting empowerment module, with the aim of reducing the stress experienced by the mothers of children suffering from leukemia. Design: The study used a quasi-experimental pre-test/post-test control group. Methods: The sample consisted of 60 mothers of leukemic children hospitalized in a pediatric oncology ward who met the inclusion criteria. The independent variable was the Family Centered Empowerment Module (FACE), which includes instruction on meeting nutritional needs, preventing infection, and preventing bleeding. The dependent variable was the stress experienced by mothers due to the hospitalization of their children. The instrument used for measuring stress of hospitalization was the DASS-21 questionnaire. The statistical tests used were Wilcoxon's signed rank test, and the Mann Whitney U Test (significance level α = 0.05). Results: There was a decrease in levels of stress in the intervention group (p = 0.001). In the control group there were differences in levels of stress both before and after treatment (p = 0.042). The results of the Mann Whitney U test indicated p = 0.017. Conclusion: Cognitive empowerment can improve the understanding of parents caring for leukemic children, and reduces the levels of stress associated with child hospitalization.

/pdf/reducing-acute-stress-disorders-in-mothers-of-leukemic-362nqdh37h.pdf

Reducing acute stress disorders in mothers of leukemic children by means of the Family Centered Empowerment module (FACE)

Background/objectives The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. Design/methods Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded. Results Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. Conclusions There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

Integration of electronic patient-reported outcomes (ePROs) into pediatric clinic settings across hematology/oncology/bone marrow transplant.

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Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

Integration of electronic patient-reported outcomes (ePROs) into pediatric clinic settings across hematology/oncology/bone marrow transplant.