Incorporating integrative medicine and patient preferences into a pilot interdisciplinary sickle cell wellness clinic
Introduction
Sickle Cell Disease (SCD) is an inherited disorder that impacts millions worldwide and nearly 100,000 persons in the United States annually.1 SCD can create difficulties in participating in developmentally-appropriate activities (e.g., sports, school attendance) due to significant pain and frequent medical visits and hospitalizations2 and co-morbid negative mood and stress has been associated with increased SCD pain, increased healthcare utilization, increased pain-related functional disability, and decreased school involvement.3, 4, 5
Pain is the number one complication of SCD, with excruciating pain caused by the polymerization of red blood cells into the shape of a sickle. These misshapen and rigid cells can cause pain in any area of the body. The sickle shaped of the red blood cells can lead to clumping, ischemia, organ damage, and painful vaso occlusive crisis. Indeed, pain is the primary reason for need for emergency room treatment and hospital admission.6
Providing pain management and psychoeducation is a mainstay of SCD care. SCD has historically been challenging to manage and often involves treatment in outpatient clinics, the Emergency Department, and on inpatient hospital units. Standard treatment for acute pain crisis includes hydration, as well as non-steroidal and opioid pain medications. When a crisis is unable to be managed outpatient, patients are admitted for IV pain medications, IV hydration, and oxygen therapy, when needed. SCD-related pain is multi-determined including vaso-occlusive crises and chronic, central sensitization pain, however all pain variants can impact quality of life.7,8 In addition, there is an increased risk for a number of conditions which can significantly impact level of functioning such as avascular necrosis, chronic hypoxia, and acute chest syndrome.
In as such, an interdisciplinary and integrative medicine approach to SCD disease and pain management is not only warranted, it is critical. 9,40While some genetic disorders (e.g., hemophilia and cystic fibrosis) have highly engaged and coordinated national networks and specialty clinics, other disorders (including SCD), have fewer options,10 especially when families live in remote or rural areas.11,12 Consequentially, many persons with SCD not have access to an interdisciplinary care approach. Fortunately, the few SCD interdisciplinary clinics are showing positive results and support increasing the prevalence of this model (e.g.13,14). It is possible that including integrative medicine, psychosocial, physical and massage therapy, and spiritual professionals in a multidimensional treatment plan can result in less reliance on medications for the treatment of chronic pain, appropriate prescribing and use of medications for SCD management, and better long-term pain, disease management, and general wellness through use of nonpharmacological strategies.
We are now beginning to better understand nonpharmacologic and mind/body skills use among youth for SCD pain management (e.g., massage therapy15, yoga16). One study found the majority of caregivers of youth with SCD reported using nonpharmacologic therapies, with the most common including prayer, spiritual healing by others, massage, and relaxation. In addition, many caregivers were open to trying additional strategies for pain management in the future.17 In a small sample study including a diary tracking approach, cognitive behavioral and physical relaxation activities (e.g., sleep, massage, heat, relaxation/meditation/self-hypnosis) were used on 84.6 % of tracked days, with more strategies used concomitantly during higher pain intensity days.18 It is important to ensure more youth are introduced to these modalities by their healthcare professionals in order to further normalize their role in a healthcare plan. Given evidence showing even brief skills interventions can have lasting impacts for youth with SCD,19 it is vital to explore feasible skills-based interdisciplinary intervention options.
This article describes the development of an interdisciplinary pediatric Sickle Cell Disease Wellness Clinic (SCWC) and reviews the first year of operation and patients treated. The SCWC, run as a collaborative venture between the Department of Pain, Palliative Care, and Integrative Medicine (PPCIM) and the Department of Hematology and Oncology (Hem/Onc), was the first clinic of its kind within it’s free-standing Children’s Hospital. Information presented here will illuminate the program development model, program structure, and clinic participants, as well as preliminary lessons, data, and future directions.
Section snippets
History
Children’s Hospitals and Clinics of Minnesota houses the largest comprehensive pediatric SCD program in Minnesota. Since the late 1990s, the program has been managed by an interdisciplinary team including a physician, nurse practitioner(s), nurse case manager(s), and social worker. Recommendations for expanded clinical care led to inclusion of a pulmonologist, neuropsychologist, and most recently, a SCD patient and family health advocate (PFHA). For a thorough explanation of its annual
Families: the foundation of a clinic
As involving family perspectives in healthcare can improve outcomes and overall engagement in the medical system, families were included in the SCWC creation. Studies show that when interacting with communities of color, early involvement supports the trust building process necessary to improve participation, openness to treatment, and health outcomes .22,41
An invitation letter to participate in a series of small group discussions was sent to sixteen households of children between 12–18 years
Sickle cell wellness clinic structure
The program’s first year structure is provided in Fig. 3 and will be described here. During the Welcome to Clinic talk, families were provided with folders including: a patient-specific schedule, satisfaction questionnaires, psychoeducation handouts about nutrition, physical activity, stress, and a “passport” that introduces the SCWC staff and their roles on the team.
Program specific details are based the biopsychosocial needs of youth who have SCD and their families.43 Each discipline covered
Patients and families – who are we serving?
The current clinical study was approved by the institutional review board. The cross-sectional approach to patient selection included patients whose care was managed within the hospital’s Department of Hematology/Oncology, regardless of genotype, and who were selected by the PFHA, nurse practitioner, and nurse case managers, as well as pain and integrative providers who provide services during inpatient hospitalization. Once a family agreed to clinic attendance, they were asked to complete
Measures
Families completed measurements of functional status, coping strategies, pain behaviors, fatigue, and SCD impact prior to the start of the SCWC. A summary of the psychosocial and neuropsychological measures given during SCWC and comprehensive clinic are listed in Table 1.
As the current study is a snapshot of the first-year pilot program, only the pertinent cross-sectional intake data is presented. The PROMIS 8-item Pain Behavior Scale were scored on a t-score metric. A t-score of 50 (SD = 10)
Preliminary findings
Data were entered by the primary author into Excel and exported to IBM SPSS Statistics 23 software for analysis. Statistical significance was set at the .05 level. Data were examined using standard descriptive techniques.
Discussion
The SCWC created an opportunity for patients and families to interact with the health care team in a new way. Feedback from family and staff has been strong and supportive. Introducing PPCIM disciplines and team members to families and patients in the outpatient setting has increased participation with PPCIM services. The SCWC has allowed the PPCIM team to establish trusting relationships within this previously underutilized medical collaboration. Anecdotally, one family who had previously
Funding
Massage services for patients with SCD are covered under annual grant dollars donated to the Cancer and Blood Disorders Clinic by the annual Anthony Ford Pond Hockey Tournament.
CRediT authorship contribution statement
Ashley N. Junghans-Rutelonis: Conceptualization, Resources, Methodology, Data curation, Writing - original draft, Writing - review & editing. Kristin L. Moquist: Conceptualization, Resources, Writing - original draft, Writing - review & editing. Rae M. Blaylark: Conceptualization, Resources, Writing - original draft, Writing - review & editing. Nicole Anderson: Writing - review & editing. Melanie L. Brown: Conceptualization, Resources, Writing - review & editing.
Declaration of Competing Interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Acknowledgements
The authors wish to thank the caregivers and patients who were a part of the family focus group and who have taken part in the Sickle Cell Wellness Clinics.
We would like to acknowledge the incredible work done by Nancy A. Jaworski RN, DNP, PCNS-BC as an original creator and enthusiastic leader for the SCWC concept. She is recognized as a champion for pain management in sickle cell patients.
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