Tag Archive for: quality of life

Rectoperineal fistula in a female

Patient-reported outcomes for children with anorectal malformation

Rectoperineal fistula in a female

Before this study, little has been documented about how anorectal malformation type, sacral ratio, age and bowel regimen affect continence and quality of life.

A large, multi-institutional study including patient-reported outcomes for children who have anorectal malformations found that the type of malformation and whether a child is clean/continent and not soiling can have a significant impact on the assessment of a patient’s quality-of-life. The study also highlights that patients and their families seem to benefit from access to a specialized center offering multi-disciplinary care in a single location.

What it means

The study is one of the first to collect input from patients and their families at two multi-disciplinary centers for colorectal care. The authors, including Marc Levitt, MD, chief of Colorectal and Pelvic Reconstruction at Children’s National Hospital, who collaborated with colleagues at Nationwide Children’s Hospital in Columbus and Royal Children’s Hospital in Melbourne Australia, sought to understand the impact of the anorectal malformation type and the development of the sacrum bone on continence outcomes in children. Additionally, the team aimed to compare continence outcomes by age group and determine the quality of life with different bowel regimens, including medications like laxatives or the use of enemas.

The researchers found that continence in patients taking laxatives to manage their bowels varied depending on the type of malformation, but that sacral ratio or a measure of the growth of a key pelvic bone correlating with pelvic floor development, did not seem to play a role in continence.

Additionally, patients (and patient families) had similar perceptions of their overall quality of life, as long as the child was clean/continent. Quality-of-life scores were lower, however,  if a child was managed using enemas but continued to experience soiling/incontinence. This vital component was a measure of patient reported outcomes, or how the patient perceives their care is going.

Why it matters

Before this study, little has been documented about how anorectal malformation type, sacral ratio, age and bowel regimen affect continence and quality of life. For the first time, these reports are coming from the patient and family point of view. In their conclusion, the authors note that the study’s findings provide important discussion points for counseling patients on long term management strategies for children with anorectal malformations. The findings also identify new areas for research driven by what patients and their families report are most important.

Read the full study, Patient-reported outcomes of Children with an Anorectal Malformation in the Annals of Surgery.

A father and daughter talk to a doctor

A breakthrough quality of life survey for kids with celiac disease

A father and daughter talk to a doctor

A research team led by Dr. Shayna Coburn, from Children’s National Hospital, developed a first-of-its-kind celiac disease-specific pediatric Quality of Life measure survey.

Celiac disease is a genetic autoimmune disorder that disrupts nutrient absorption and results in a permanent intolerance to gluten. Assessing quality of life (QOL) is a vital component in the screening and management of this chronic condition. In a study published in the American Journal of Gastroenterology, researchers from Children’s National Hospital developed a first of its kind celiac disease-specific pediatric QOL measure (CDLIFE) survey. Shayna Coburn, PhD, psychosocial health director of the Celiac Disease Program and lead author of the study, shared how Children’s National is leading the way with this work.

What’s been the hold-up in the field?

Several surveys have been developed to assess quality of life in individuals with celiac disease; however, they present significant limitations when applied to pediatric populations. Some instruments were developed in other countries, where differing food environments and support resources for individuals with celiac disease affect their applicability. Additionally, existing tools often target adults, while pediatric-focused surveys are restricted to children aged eight years and older. This constraint is increasingly problematic as the age of celiac disease diagnosis continues to decrease. Notably, in our celiac disease clinic, approximately half of our patients are under the age of eight, highlighting the critical need for a QOL assessment tool tailored to this younger demographic.

How does this work move the field forward?

This work represents a significant advancement in the field by introducing the CDLIFE survey, a concise and user-friendly QOL survey designed specifically for individuals with celiac disease aged two to 18. The tool includes both a youth self-report and a parent-proxy form, providing flexibility in capturing QOL data across developmental stages. Developed with direct input from families, the CDLIFE survey reflects experiences and challenges that are most relevant to patients and caregivers.

This survey demonstrates strong correlations with existing measures of QOL and celiac disease-specific experiences, ensuring its validity and reliability while adhering to FDA guidelines for patient reported outcome measures.

How will this work benefit patients?

The CDLIFE survey provides a valuable tool for patients and health care providers to assess how individuals are managing life with celiac disease, offering insights into areas where additional support may be needed. This survey empowers providers to deliver more personalized and targeted care and serves as a vital resource in research. It enables a deeper understanding of patient experiences and function by serving as a reliable patient-reported outcome measure in clinical trials.

How is Children’s National leading in this space?

The CDLIFE survey is the first pediatric QOL measure specifically designed to include young children, addressing a critical gap in current tools. Its development has generated significant enthusiasm within the pediatric celiac disease community, evidenced by numerous requests for the tool even prior to its formal publication. By leading this effort, Children’s National is part of a select group of institutions driving innovation and setting new standards for understanding and improving quality of life for youth with celiac disease.

Authors on the study from Children’s National include: Pamela Hinds, RN, PhD, FAAN, Randi Streisand, PhD, James Bost, PhD, Jack Vagadori, MS, and Paige Trojanowski, PhD.

Nurse comforting patient

End-of-life-care goals for adults living with HIV

Nurse comforting patient

Palliative care is specialized medical care for people living with a serious illness with the goal of improving quality of life. HIV is one illness where studies have shown that palliative care for persons living with HIV (PLWH) can improve pain and symptom control as well as psychological well-being.

There are about 1.2 million people living with human immunodeficiency virus (HIV) in the U.S., according to the CDC. In 2018, more than 37,000 people were newly diagnosed.

Integrating culturally sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

In a recent article published in the American Journal of Hospice and Palliative Medicine, Maureen Lyon, Ph.D., clinical health psychologist at Children’s National Hospital, and her colleagues examined factors influencing end-of-life care preferences among PLWH. Researchers conducted a survey of 223 adults living with HIV from five hospital-based clinics in Washington, DC. Participants completed an end-of-life care survey at as part of the FACE™-HIV Advance Care Planning clinical trial. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors and advance care plans over relationships. African Americans had three times the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio=3.30 (95% CI, 1.09, 10.03), p=0.035.

Those who prioritized relationships if dying were significantly more likely to be females and African Americans; while those who prioritized self-determination over relationships were significantly more likely to be males and non-African Americans. The four transgendered participants prioritized relationships.

Survey results show that most PLWH receiving care in Washington, D.C., preferred to die at home, regardless of race. Yet in the United States, most persons who die of HIV related causes die in the hospital. Sexual minorities feared dying alone, consistent with the stigma and discrimination which places many at risk of social isolation. Non-heterosexuals were less likely to find the church as a source of comfort, which may reflect feelings of discrimination, due to homophobic messages. However, if the church community is affirming of sexual minority status, religion could serve as a protective factor. Study findings may generate interventions to decrease social isolation and increase palliative care services for non-heterosexual PLWH.

These results fill a gap in our understanding of the self-reported goals and values of adults living with HIV with respect to end-of-life care. Findings contribute specificity to previous research about the importance of family, relationships and religiousness/spirituality with respect to end-of-life issues for ethnic and racial minorities.

Researchers from Children’s National involved in this study include Maureen Lyon, Ph.D., Jichuan Wang, Ph.D. and Lawrence D’Angelo, M.D., M.P.H.

The full study can be found in the American Journal of Hospice & Palliative Medicine.

people sitting in a circle holding hands

Religiousness linked to improved quality of life for people with HIV

people sitting in a circle holding hands

Adults living with HIV in Washington, D.C., were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual.

Adults living with HIV in Washington, D.C., were more likely to feel higher levels of emotional and physical well-being if they attended religious services regularly, prayed daily, felt “God’s presence,” and self-identified as religious or spiritual, according to research published online Jan. 29, 2020, in Psychology of Religion and Spirituality. By contrast, patients living with HIV who had the lowest levels of quality of life and more mental health challenges were privately religious, potentially eschewing organized religion due to fears about being stigmatized or ostracized.

“These findings are significant because they point to the untapped potential of encouraging patients living with HIV who are already religious to attend religious services regularly.  Scientific evidence suggests that religions that present God as all-powerful, personal, responsive, loving, just and forgiving make a difference in health-related quality of life. By contrast, belief systems and religions that see God as punishing, angry, vengeful and distant and isolate members from their families and the larger community do not have health benefits or contribute to health-related quality of life. People who identify as spiritual also benefit from improved overall health-related quality of life,” says Maureen E. Lyon, Ph.D., FABPP, a clinical health psychologist at Children’s National Hospital, and senior study author.

“In general, patients living with HIV have reported that they wished their health care providers acknowledged their religious beliefs and spiritual struggles. Additional research is needed to gauge whether developing faith-based interventions or routine referrals to faith-based programs that welcome racial and sexual minorities improve satisfaction with treatment and health outcomes,” Lyon adds.

More than 1 million people in the U.S. live with HIV, and in 2018, 37,832 people received an HIV diagnosis in the U.S., according to the Centers for Disease Control and Prevention (CDC). In 2017, the Washington, D.C., region recorded one of nation’s highest rates of new cases of HIV: 46.3 diagnoses per 100,000 people, according to the CDC.

A research team that includes current and former Children’s National faculty wanted to learn more about the degree of religiousness and spirituality reported by people living with HIV and the interplay between religion and health-related quality of life. They recruited patients to participate in a clinical trial about family-centered advance care planning and enrolled 223 patient/family dyads in this study.

Fifty-six percent of patients were male. Eighty-six percent were African American, and their mean age was 50.8. Seventy-five percent were Christian.

The researchers identified three distinct classes of religious beliefs:

  • Class 1, the highest level of religiousness/spirituality, applied to people more likely to attend religious services in person each week, to pray daily, to “feel God’s presence” and to self-identify as religious and spiritual. Thirty-five percent of study participants were Class 1 and tended to be older than 40.
  • Class 2 applied to privately religious people who engaged in religious activities at home, like praying, and did not attend services regularly. Forty-seven percent of study participants were Class 2.
  • Class 3 participants self-identified as spiritual but were not involved in organized religion. Nearly 18 percent of study participants were Class 3, the lowest overall level of religiousness/spirituality.

Class 1 religiousness/spirituality was associated with increased quality of life, mental health and improved health status.

“Being committed to a welcoming religious group provides social support, a sense of identity and a way to cope with stress experienced by people living with HIV,” Lyon says. “We encourage clinicians to capitalize on patients’ spiritual beliefs that improve health – such as prayer, meditation, reading spiritual texts and attending community events – by including them in holistic treatment programs in a non-judgmental way.”

What’s more, the research team encourages clinicians to appoint a member of the team who is responsible for handling religiousness/spirituality screening and providing referrals to welcoming hospital-based chaplaincy programs or community-based religious groups.

“This is particularly challenging for HIV-positive African American men who have sex with men, as this group faces discrimination related to race and sexual orientation. Because HIV infection rates are increasing for this group, this additional outreach is all the more important,” she adds.

In addition to Lyon, study co-authors include Biostatistician Jichuan Wang, Ph.D., and Yao I. Cheng, MS., both of Children’s National; and Lead Author Katherine B. Grill, Ph.D., the former clinical coordinator for this randomized clinical trial who is currently an adjunct professor at the California Institute of Integral Studies.

Financial support for research described in this post was provided by the National Institutes of Health under award Nos. R01NR014-052-05 and UL1RR031988.

 

Kaushalendra Amatya

Measuring quality of life after pediatric kidney transplant

Kaushalendra Amatya

“Overall, children who receive kidney transplants had minimal concerns about quality of life after their operation. While it’s comforting that most pediatric patients had no significant problems, the range of quality of life scores indicate that some patients had remarkable difficulties,” says Kaushalendra Amatya, Ph.D., a pediatric psychologist in Nephrology and Cardiology at Children’s National and the study’s lead author.

After receiving a kidney transplant, children may experience quality-of-life difficulties that underscore the importance of screening transplant recipients for psychosocial function, according to Children’s research presented May 4, 2019, during the 10th Congress of the International Pediatric Transplant Association.

About 2,000 children and adolescents younger than 18 are on the national waiting list for an organ transplant, according to the Department of Health and Human Services, with most infants and school-aged children waiting for a heart, liver or kidney and most children older than 11 waiting for a kidney or liver. In 2018, 1,895 U.S. children received transplants.

The research team at Children’s National wanted to hear directly from kids about their quality of life after kidney transplant in order to tailor timely interventions to children. Generally, recipients of kidney transplants have reported impaired quality of life compared with healthy peers, with higher mental health difficulties, disrupted sleep patterns and lingering pain.

The Children’s team measured general health-related quality of life using a 23-item PedsQL Generic Core module and measured transplant-related quality of life using the PedsQL- Transplant Module. The forms, which can be used for patients as young as 2, take about five to 10 minutes to complete and were provided to the child, the parent or the primary care giver – as appropriate – during a follow-up visit after the transplant.

Thirty-three patient-parent dyads completed the measures, with an additional 25 reports obtained from either the patient or the parent. The patients’ mean age was 14.2; 41.4% were female.

“Overall, children who receive kidney transplants had minimal concerns about quality of life after their operation. While it’s comforting that most pediatric patients had no significant problems, the range of quality of life scores indicate that some patients had remarkable difficulties,” says Kaushalendra Amatya, Ph.D., a pediatric psychologist in Nephrology and Cardiology at Children’s National and the study’s lead author.

When the study team reviewed reports given by parents, they found their descriptions sometimes differed in striking ways from the children’s answers.

“Parents report lower values on emotional functioning, social functioning and total core quality of life, indicating that parents perceive their children as having more difficulties across these specific domains than the patients’ own self reports do,” Amatya adds.

10th Congress of the International Pediatric Transplant Association presentation

  • “An exploration of health-related quality of life in pediatric renal transplant recipients.”

Kaushalendra Amatya, Ph.D., pediatric psychologist and lead author; Christy Petyak, CPNP-PC, nurse practitioner and co-author; and Asha Moudgil, M.D., medical director, transplant and senior author.