Initial development of a self-report survey on use of Nonpharmacological and Self-Care Approaches for Pain management (NSCAP)

Nonpharmacological approaches for pain management (NPMs), including complementary and integrative health and self-care approaches, are strongly encouraged by a growing number of practice guidelines and professional organizations.^1,2 The National Institutes of Health (NIH) National Center for Complementary and Integrative Health (NCCIH) and the Department of Veterans Affairs (VA) have both launched initiatives promoting whole-person care, including an emphasis on NPMs and self-management.³ A 2017 VA-sponsored State of the Art conference⁴ described evidence-based NPMs in 3 categories: psychological/behavioral treatments, exercise/movement–based therapies, and manual therapies (including complementary and integrative health approaches, such as manipulation and acupuncture). Many of these are also done as self-care (eg, relaxation techniques, exercise).

Despite numerous convergent recommendations, uptake of NPMs appears to be low⁵ and varies by patient characteristics.⁶ However, challenges in NPM measurement could contribute to this appearance of modest uptake. Many of these treatment approaches are not reliably captured in the electronic health record (EHR), either because there are not standardized coding practices (eg, no Current Procedural Terminology [CPT] codes exist), the approaches are received outside the health system (eg, in nonmedical settings), or the approach is used at home (ie, self-care).⁷

Accurate measurement of NPM use is important for several reasons. Most pain is managed in primary care, and many primary care providers might not ask about nonpharmacological care (eg, yoga) outside the health system or pain self-management (eg, mindfulness practices), or they might not document such care in the EHR. Routine availability of information about patients’ use of these approaches is important for monitoring the quality and effectiveness of pain care plans. For example, improvements in pain might be ascribed solely (and inaccurately) to pharmacological interventions documented in the EHR, rather than to multimodal treatment packages that include practitioner-provided NPMs and self-care approaches. Additionally, uncertain measurement compromises quality-improvement initiatives and clinical research designed to evaluate the effectiveness of or improve access to these approaches. Finally, more accurate measurement could help healthcare systems improve coding practices as they develop EHR documentation strategies that might encourage healthcare systems to lower barriers to care and motivate patients to engage in NPM and self-care approaches.

To address these challenges, the Pain Management Collaboratory (PMC) created a self-report survey titled “Nonpharmacological and Self-care Approaches from PMC (NSCAP).” The PMC is a portfolio of pragmatic clinical trials (PCTs) funded by the NIH, Department of Defense (DOD), and VA to support improved care of veterans, military service members, and their families with pain and common co-occurring conditions.⁸ Several of the PCTs aim to promote NPM engagement. The purpose of the present article is to describe the development of the NSCAP, which is used by several PMC PCTs.

The PMC, initially funded in 2017, is a cooperative group of PCTs involving DOD and VA research programs and multiple NIH institutes, centers, and offices. The PMC includes a Coordinating Center (PMC³) that provides leadership and technical expertise to support participating PCTs and facilitate research partnerships with VA and DOD healthcare systems. PCT representatives participate in 7 PMC³ Work Groups to support data sharing and the development of technical tools (eg, surveys, common data elements), as well as to foster shared learning within the PMC community. Work Groups are supported by faculty-level chairs, an experienced project manager, and representatives of each PCT. These Work Groups ensure that PCTs produce reliable and trustworthy data by engaging in activities such as providing biostatistics and study design guidance, optimizing the use of existing EHR data, and promoting harmonization of measurement approaches.

During a 2-year feasibility and planning phase for the conduct of the large-scale PCTs, the Phenotypes and Outcomes Work Group, responsible for promoting harmonization of measurement approaches, identified the need for a survey to capture patient-reported use of NPMs and self-care approaches to complement pain-related healthcare utilization data available in the EHR (eg, procedure codes). The Work Group identified several potential research and clinical uses for this survey within the PMC. First, categorizing types of nonpharmacological and self-care approaches into harmonized phenotypes supports researchers and clinicians in more accurately and consistently characterizing samples and the types of approaches patients use. Second, some PMC PCTs compared effectiveness of different treatments, and monitoring pain management approach utilization with a survey could help researchers identify potential treatment contamination. Third, some PCTs aimed at increasing uptake of NPMs, and this survey might enhance their ability to accurately measure uptake, particularly that of approaches not easily observed in the EHR.

Although the Phenotypes and Outcomes Work Group was focused primarily on developing a survey for the PMC, this survey could also have utility outside the PMC PCTs. For example, if the survey is found to be feasible to use and yields usable information within the PMC, it might also be valuable to other researchers or those interested in quality-improvement work that aims at enhancing uptake of NPMs. Additionally, a user-friendly, brief survey could support clinical care by helping clinicians monitor patients’ use of various pain management modalities.

To develop the NSCAP, the Phenotypes and Outcomes Work Group formed a panel of 25 experts in NPMs and complementary and integrative health approaches, including members of the PMC community, the NCCIH, and other external experts (eg, pain researchers and clinicians), to advise on the creation of the survey. Over the course of approximately 6 months, the panel collaborated with representatives from the PMC community, including PCT investigators, study sponsors, and veteran representatives of the PMC Patient Resource Group, to solicit iterative input on the survey. This process comprised a mixture of meetings (conducted via teleconference and in person) and email correspondence in which the panel received and reviewed feedback on multiple survey drafts, including feedback about the modalities that should be captured by the survey and what information about each modality should be gathered. The Work Group reviewed other instruments^9,10 and expert guidance to collectively come to consensus on a final version, which was also reviewed by the Pain/Opioid Veteran Engagement Panel. The goal of this process was to finalize a version of the NSCAP during the PCT planning phase in time for it to be used at the initiation of the PMC PCTs beginning in the late summer of 2019.

The PMC leadership approved the first version of the NSCAP in August 2019. The survey includes 9 specific treatment approaches: acupuncture, spinal manipulation, massage, yoga, tai chi, exercise, relaxation techniques, meditation/mindfulness, and psychotherapy/counseling. Each NPM includes a description with examples. The survey starts with the question, “In the past 3 months, have you tried …?,” for each approach. For those who respond yes, they are asked their main reason—to manage pain, to manage a symptom other than pain, or to improve well-being or general health. Then, a self-report effectiveness question queries about perceived effectiveness of the approach on a 0-to-10–point scale.

Next, respondents are asked whether they received the treatment from a practitioner within the prior 3 months (eg, a healthcare provider, therapist, instructor, or personal trainer), and if so, how many times (1–2 times, 3–5 times, or 6+ times) and in what type of setting (clinic or facility for veterans, military treatment facility, or other setting). For NPMs respondents could do on their own, they are asked to estimate how many days they engaged in the NPM in the prior month and where they learned the approach. Economic/payment questions were considered but ultimately excluded because of the complexities of reimbursement/payment. The survey can be completed by patients in either a written or an online format.

The finalized NSCAP, Version 1.0 (available at https://painmanagementcollaboratory.org/nonpharmacological-and-self-care-approaches/), is designed to capture use of nonpharmacological and self-care approaches for pain management. It was developed with input from experts within and outside of the PMC community, including patients with lived experience of pain, over a 6-month iterative process, to support trials in the PMC to measure use of NPMs typically not captured in the EHR. Several PMC PCTs are currently using the survey in their clinical trials. Research assistants from 2 trials report positive experiences using the survey with participants.

This survey might be relevant to a broader array of projects beyond the PMC community and has potential clinical implications. It is a relatively brief survey with high face validity and provides information about NPM and self-care approaches commonly used to manage pain, including information about frequency of use and perceived effectiveness. This information could be particularly helpful as a complement to EHR data; many of the approaches asked about in this survey are done via self-management, and even when delivered by healthcare providers, they are not reliably captured in the EHR. As it is a new instrument, we have yet to examine its psychometric properties. The survey is limited in its ability to assess variability within individual NPMs, such as costs or provider type, as well as training and other tools patients might have when engaging in NPMs on their own. Additionally, questions about setting are tailored to a VA/military population. Feedback from the PCTs using the survey could support future refinements and modifications for a subsequent version. Data on reliability and validity are not yet available. Future analyses using PCT data could shed light on the optimal methods for improving and generalizing the utility of this novel measure.

Funding

Research reported in this publication was made possible by Grant Number U24 AT009769 from the National Center for Complementary and Integrative Health (NCCIH), and the Office of Behavioral and Social Sciences Research (OBSSR), in addition to support from the following UG3/UH3 cooperative agreements from the NCCIH: UG3AT009767 and UG3AT009765. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCCIH, OBSSR, or the National Institutes of Health.

Conflicts of interest: No authors report any potential conflicts of interest.

Supplement statement

This article appears as part of the supplement titled “Pain Management Collaboratory: Updates, Lessons Learned, and Future Directions.”

This manuscript is a product of the Pain Management Collaboratory. For more information about the Collaboratory, visit https://painmanagementcollaboratory.org/.