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sick child in palliative care hospital bed

Children’s National Research Institute receives NIH grant for palliative care study

sick child in palliative care hospital bed

A new NIH grant will support the first study that examines palliative care needs in pediatric rare disease community.

The National Institute of Health (NIH) has awarded $500,875 to the Children’s National Research Institute (CNRI), the academic arm of Children’s National Hospital, to support a new study examining the palliative care needs of children living with rare genetic diseases.

This is the first study of families of children with genetic and metabolic conditions, termed collectively as rare diseases, that is designed to intervene to support the well-being of family caregivers and create advance care plans for future medical decision making. In the United States, a rare disease is defined as a particular condition affecting fewer than 200,000 people. Pediatric patients with rare diseases experience high mortality rates, with 30 percent not living to see their fifth birthday.

“Children with ultra-rare or complex rare disorders are routinely excluded from research studies because of their conditions, creating a significant health disparity. Surveys show that families of children with rare diseases are adversely impacted by lack of easy access to peer and psychological support,” says Maureen Lyon, Ph.D., Clinical Health Psychologist and Professor of Pediatrics at the CNRI and principal investigator on the project. “This study will examine the palliative care needs of family caregivers of children with rare genetic disorders and advance care planning intervention, which will ultimately help facilitate discussions about future medical care choices that families are likely to be asked to make for their child.”

Although greatly needed, there are few empirically validated interventions to address these issues Currently, there is only one intervention described for families of children with rare diseases — a Swedish residential, competence program — which focuses on active coping. However, this intervention does not address pediatric advance care planning, a critical aspect of palliative care.

Lyon adds that the major benefit of this proposed project will be filling the gap in knowledge about what family caregivers of medically fragile children with rare diseases want with respect to palliative care. In the United States, these families are expected to provide a level of care that, until a few decades ago, was reserved for hospitals.

Maureen E Lyon

Maureen Lyon, Ph.D., Clinical Health Psychologist and Professor of Pediatrics at the CNRI and principal investigator on the project.

“Our hope is that this study will provide a structured model for facilitating family decisions about end-of-life care, for those families who do not have the good fortune to have children who have the capacity to share in decision-making,” Lyon says.

In addition to bridging the knowledge gap regarding palliative care in rare disease patients, the study will also help inform current clinical, ethical and policy discussions, as well as the legal issues in a variety of areas, such as the debate surrounding advocacy, particularly for those children with impairments in physical function.

“We look forward to the results of this study,” said Marshall Summar, M.D., director of the Rare Disease Institute and division chief, Genetics and Metabolism at Children’s National Hospital. “As a leader in rare disease care, we continually examine how we can improve care and support for our patient families at our clinic and want to share our findings with others engaged in caring for rare disease patients. Because rare diseases can be life limiting in some cases, we need to learn all we can about how best to care and support a patient and family as they prepare for a potential transition to palliative care.”

All research at Children’s National Hospital is conducted through the CNRI, including translational, clinical and community studies. The CNRI also oversees the educational activities and academic affairs of the hospital and the Department of Pediatrics at the George Washington University School of Medicine and Health Sciences, frequently partnering with many other research institutions regionally and nationally. CNRI conducts and promotes translational and clinical medical research and education programs within Children’s National Hospital that lead to improved understanding, prevention, treatment and care of childhood diseases.

doctor and patient filling out paperwork

How advance care planning can improve life in a pandemic and beyond

doctor and patient filling out paperwork

New research, published in AIDS and Behavior, shows the effectiveness of an Advance Care Planning model developed through participatory research with adolescents in improving palliative care among adult people living with HIV (PLWH).

Since the beginning of the COVID-19 pandemic, there has been a dramatic increase in advance care planning (ACP) and the creation of advance directives, also known as living wills, in the United States. New research, published in AIDS and Behavior, shows the effectiveness of an ACP model developed through participatory research with adolescents in improving palliative care among adult people living with HIV (PLWH).

These findings demonstrate that ACP positively contributes to the palliative care of adult PLWH by relieving suffering and maximizing quality of life. The intervention was based on the FAmily CEntered (FACE) Advance Care Model, which was developed and tested by principal investigator Maureen E. Lyon, Ph.D., and her colleagues.

Dr. Lyon’s team used this model successfully with adolescents living with HIV as part of five-year, five-site trial that included Children’s National Hospital. The trial was co-funded by the National Institutes of Health and National Institute of Nursing Research. The success of that study was parlayed into a new five-year study testing a slightly modified ACP intervention in adults, with Children’s National serving as the coordinating center. “The adolescents showed us the way,” says Dr. Lyon.

The paper details the findings of a longitudinal, two arm, randomized controlled clinical trial examining whether an ACP intervention aimed at adult PLWH and their families correlated with higher congruence in treatment preferences, as well as higher congruence over time. Patient-surrogate dyads were randomized to an ACP intervention arm or an active control arm at a 2:1 ratio (86 intervention dyads and 43 control dyads at 18-month follow up), due to prior demonstrated benefit of ACP.

The ACP intervention consisted of two 60-minute, patient-focused sessions. During session 1, Respecting Choices Next Steps® ACP Conversation, both patients and their surrogate decision-makers focused on the patients’ understanding of HIV, experience of symptoms, fears, hopes and worries. Next, a patient’s treatment preferences were explored via the Statement of Treatment Preferences (SoTP), which became a part of the patient’s electronic health record (EHR). Surrogates were questioned on their comprehension and willingness to comply with the patient’s wishes. Session 1 was acknowledged as the beginning of a conversation, and continued conversation between the dyad was encouraged.

Session 2, Five Wishes©, involved a facilitator guiding the dyad through a Five Wishes© advance directive. Session 2 resulted in legal documentation of a patient’s preferences in five specific areas: The patient’s preferred health care decision-maker, the kind of medical treatment the patient wants, how comfortable the patient wants to be, how the patient wants people to treat him/her and what the patient wants loved ones to know. The patient, surrogate and treating physicians all received a copy, and a copy was also submitted to the patient’s EHR.

Dyads in the control arm participated in two 60-minute sessions entitled Developmental or Relationship History (excluding any medical questions) and Nutrition & Exercise.

The researchers then assessed treatment preference congruence for each patient-surrogate dyad by presenting them with five different hypothetical scenarios. After the first session, congruence across all scenarios was significantly higher among ACP intervention dyads compared to control dyads. ACP patients were also significantly more likely to give their surrogates leeway in treatment decision making compared to control patients.

Compared to control dyads, ACP dyads were significantly more likely to maintain High → High congruence transition and significantly less likely to experience Low → Low congruence transition as measured from immediately post-intervention to 12-months post-intervention. The only two cases of Low → High congruence transition occurred in the intervention arm. Of note, ACP surrogates accurately reported on changes in patient preferences over one year, showing the positive impact of early conversation on longitudinal congruence.

Dr. Lyon hopes these results will encourage people to talk to their loved ones as soon as possible about ACP, not only during the current pandemic but into the future. “People can use what’s happening in the news as a trigger to begin these conversations,” she says. “The 1990 Patient Self-Determination Act (PSDA) encourages persons of all ages– including children and their parents– to decide the type and extent of medical care they want to accept or refuse if they become unable to make those decisions due to illness. Our research shows conversations matter.”

The original research paper, “Effect of FAmily CEntered (FACE®)Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial,” was recently published in AIDS and Behavior. Dr. Maureen E. Lyon, Ph.D., FABPP, of the Center for Translational Research/Children’s Research Institute, was the principal investigator of the trial and a co-senior of the paper.

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.