Incorporating integrative medicine and patient preferences into a pilot interdisciplinary sickle cell wellness clinic

https://doi.org/10.1016/j.ctim.2020.102333Get rights and content

Highlights

  • SCWC increased access to integrative medicine and wellness strategies.

  • SCWC increased follow-up appointment engagement and participants reported high levels of satisfaction with their healthcare experience.

  • It is feasible to run a multidisciplinary clinic focused on pain management, coping skills, and healthy living for children with Sickle Cell.

Abstract

Objective

Sickle Cell Disease (SCD) is an inherited blood disorder that includes acute pain episodes and chronic pain that can dramatically impact quality of life and goal-achievement. Our staff had limited success in connecting families with the Pain, Palliative Care and Integrative Medicine Clinic (PPCIM) to receive specialized skills for pain management. We created a partnership between Hematology and PPCIM to provide SCD patients/families with needed resources.

Design/setting

In 2016, key stakeholders collaborated to create a Sickle Cell Wellness Clinic (SCWC) clinic to provide families access to integrative medicine and wellness strategies. Design/structure, based on family focus group data and staff expertise, included a half-day, 7-discipline clinic housed in the PPCIM space. Patients with SCD, ages 8–20, learned strategies in an effort to improve health care utilization and increase overall quality of life.

Main outcome measures/results

Feedback from two successful pilot clinics in 2017 was incorporated into the formal roll-out of SCWC in 2018. SCWCs continued monthly for one year, serving a total of 20 families post-pilot. SCD patients increased follow-up appointment engagement in the PPCIM clinic following SCWC and reported high levels of satisfaction with their healthcare experience.

Conclusions

It is feasible to run a multidisciplinary clinic focused on pain management, coping skills, and healthy living with SCD. Providers benefited from the opportunity to collaborate with other disciplines. Patient and family feedback was positive, highlighted benefits of being introduced to new modalities, and reported advantages of meeting other patients/families in a new setting.

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.

References (45)

  • E.O. Wakefield et al.

    Perceived racial bias and health-related stigma among youth with sickle cell disease

    J Dev Behav Pediatr

    (2017)
  • A. Aich et al.

    Mechanisms of pain in sickle cell disease, sickle cell disease‐pain and common chronic complications, Baba Psalm Duniya Inusa

    IntechOpen

    (2016)
  • S.D. Grosse et al.

    Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders

    Pediatrics

    (2009)
  • A. Haque et al.

    Socioeconomic distress and health status: the urban-rural dichotomy of services utilization for people with sickle cell disorder in North Carolina

    J Rural Health

    (2000)
  • J. Telfair et al.

    Rural/urban differences in access to and utilization of services among people in Alabama with sickle cell disease

    Public Health Rep

    (2003)
  • A.M. Brandow et al.

    The impact of a multidisciplinary pain management model on sickle cell disease pain hospitalizations

    Pediatr Blood Cancer

    (2011)
  • L.E. Crosby et al.

    Using quality improvement methods to implement an electronic medical record (EMR) supported individualized home pain management plan for children with sickle cell disease

    J Clin Outcomes Manag

    (2014)
  • K.L. Lemanek et al.

    A randomized controlled trial of massage therapy in children with sickle cell disease

    J Pediatr Psychol

    (2009)
  • S.L. Yoon et al.

    Comprehensive, integrative management of pain for patients with sickle-cell disease

    J Altern Complement Med

    (2006)
  • C. Dampier et al.

    Physical and cognitive-behavioral activities used in the home management of sickle pain: a daily diary study in children and adolescents

    Pediatr Blood Cancer

    (2004)
  • K.M. Gil et al.

    Daily coping practice predicts treatment effects in children with sickle cell disease

    J Pediatr Psychol

    (2001)
  • K.E. Wills et al.

    Transition planning for youth with sickle cell disease: embedding neuropsychological assessment into comprehensive care

    Pediatrics

    (2010)
  • Cited by (7)

    • Special issue: Pediatric pain and sickle cell disease

      2022, Complementary Therapies in Medicine
    • Integrative holistic approaches for children, adolescents, and young adults with sickle cell disease: A single center experience

      2021, Complementary Therapies in Medicine
      Citation Excerpt :

      As a result, many large cancer centers now offer integrative services that encourage patients to use some of the therapies that weren’t previously considered part of conventional therapy. A sickle cell wellness center at another children’s hospital reported successfully running an integrative clinic that provided patients with physical therapy, psychology, spiritual care, pain medicine as well as integrative medicine approaches such as relaxed breathing, biofeedback and essential oils, healthy environments, sleep hygiene, and nutrition.20 We report that the holistic approach offered in our clinic has been enthusiastically accepted by our patients even while funding for these modalities remains challenging.

    View all citing articles on Scopus
    View full text