Reaching experts for enhanced referral (REFER) to pain psychology: a modified Delphi approach with multidisciplinary paediatric pain providers at a specialised center in the USA

Study design

We employed a three-round modified Delphi approach12 consulting multidisciplinary paediatric pain providers including physicians (MD), psychologists (PSY), physical therapists (PT), occupational therapists (OT) and nurse practitioners (PT, NP). The Delphi approach is a structured method for achieving consensus among experts on a specific topic when knowledge is incomplete or uncertain, based on the assumption that group judgements are more valid than those of individuals.12 The details of the Delphi procedure were preregistered in the Open Science Framework (https://osf.io/4sdfv). The procedure was carried out in accordance with the ethical principles of the Declaration of Helsinki, and the study was compliant with the Institutional Review Board of Stanford University. Based on the responses to an online survey (Round 1), initial statements were developed including the formulation of an example referral conversation. Both were revised in three separate REFER panels (MD panel, PSY panel, PT, OT, NP panel; Round 2). A priori consensus criteria were verified within and between groups using anonymous responses to a concluding online survey (Round 3).

Patient and public involvement

For this Delphi process, we involved paediatric pain providers to develop an ideal referral plan from their perspective. However, patients and/or the public were not involved.

Setting

The Paediatric Pain Management Clinic (PPMC) at Stanford Medicine Children’s Health is a tertiary pain clinic that houses multiple disciplines, including physicians (MD), NP, pain PSY, PT and OT, which offer treatment to children and adolescents who experience chronic pain (ie, persist or recurrent for >3 months). Patients are referred to the PPMC by other treatment providers such as paediatricians, rheumatologists, neurologists and orthopedists. Initial evaluations are conducted collaboratively by the multidisciplinary team. Following the initial evaluation, an individualised biopsychosocial treatment plan is rendered. Treatment occurs at the outpatient or intensive outpatient level and typically consists of pain psychology, physical therapy medical intervention and medication management. Pain psychology consists of cognitive-behavioural interventions focused on (1) pain management and (2) graded exposure to avoided experiences, with a specific focus on functional goals to increase movement, self-regulation and cognitive interventions focused on identifying and addressing negative thoughts and feelings that arise in the context of ongoing pain and related impairment. Group interventions are also offered to patients in the PPMC.

Paediatric pain providers

Based on decades of experience treating youth with chronic pain at the PPMC, with pain psychology as a cornerstone, we considered the paediatric pain providers at this site to be experts who could share their knowledge about an ideal referral process to pain psychology. We invited all paediatric pain providers in the PPMC (n=20) with the aim of recruiting at least half. This proposed sample size is consistent with the panel size in other Delphi studies13 14 and qualitative studies.15 Given the narrowly defined objective and the multi-stage Delphi process that allowed for revision and refinement, we were confident that the data would be adequately captured. With 12 participating experts in Round 1, 11 participating experts in Round 2, and 18 participating experts in Round 3, we met our recruitment goal. More details about the paediatric pain providers can be found in table 1.

Round 1: online survey

One week before the REFER panels were scheduled, paediatric pain providers received an online survey with 16 open-ended questions (see online supplemental material S1) that guided them to reflect conceptually on pain psychology (eg, ‘How do you conceptualise pain psychology?’, ‘How do you conceptualise graded exposure treatment?’), patient suitability for pain psychology (eg, Which patients do you consider suitable for pain psychology?’) and graded exposure treatment (eg, ‘Which patients do you consider suitable for GET Living as a specialised pain psychology treatment?’), and the referral process (eg, ‘What is the best timing for referral?’ ‘What are barriers for referral?’). Paediatric pain providers were also asked to paraphrase how they typically present pain psychology to families (eg, ‘Briefly paraphrase how you would present pain psychology to families’). Their responses were synthesised into initial summary statements describing a concrete action plan including provider’s responses characterising patient suitability and describing an ideal referral process to pain psychology. Based on this synthesis, essential elements of a referral conversation were identified (eg, showing interest and expressing empathy for the unique pain experience). The initial statements and the referral conversation elements served as a starting point for the later expert panels. Twelve paediatric pain providers participated in Round 1 (n=5 MD, n=5 PSY, n=1 PT, and n=1 OT).

Round 2: expert panel

Paediatric pain providers were invited to join a subsequent REFER panel moderated by the first author (LS) who did not have any relation to the clinic or the staff prior to the panel. Researchers on the study team who had dual clinical and research roles within the PPMC were not involved in the REFER panels (LES, LEH). The panel discussion lasted approximately 1 hour. The REFER panels were held separately for paediatric pain providers with different professional backgrounds to elicit nuances of perspectives within each discipline. This approach also enabled us to explore possible divergences in the opinions of the disciplines. Due to fewer participants in these roles, the allied health professionals (PT, NP, OT) were combined into one group. In the beginning, the initial statements based on the first online survey were presented via printouts so that panellists could take notes or highlight important statements. The panellists were then guided to elaborate and discuss each statement. In the first part of the panel discussion, panellists were instructed to formulate specific statements that characterise patient suitability for pain psychology. In the second part of the panel discussion, panellists were instructed to formulate an action plan to improve referrals to pain psychology. To further refine the discussion, patient vignettes were presented that varied in their degree of diagnostic uncertainty,16 medical mistrust,17 pain-related fear avoidance,18 and complexity of mental health condition,19 theorising that these factors could potentially influence the referral decision made by each provider. The vignettes were thus intended to help panellists reflect more concretely on critical cases throughout their discussion. To produce the vignettes in the current study, a vignette used in previous research10 was adapted to the current context and manipulated to create four vignettes that differed to emphasise the four predetermined factors. The adaptation was done according to existing guidelines (see online supplemental material S2).20 During the expert panels, developed statements were written down by one investigator (NJ) who read the statements aloud to the panellists to confirm that they were consistent with the stated opinion. In this process, no absolute consensus was sought. Another investigator (RM) summarised the discussion that unfolded during the generation of statements to cross-check the accuracy of the statements. Lastly, panellists were asked for their feedback on the referral conversation elements. For example, the experts could add further elements to the referral conversation or refine the sample formulations. Eleven paediatric pain providers participated in Round 2 (MD panel: n=4; PSY panel: n=5; PT, OT, NP panel: n=2 with OT and PT represented).

Round 3: consensus rating

In a concluding online survey approximately 1 month later, paediatric pain providers were asked to indicate their level of agreement to statements that were developed in the different panels on a 5-point Likert scale (1, strongly disagree to 5, strongly agree). They could suggest minor adjustments to the statements (eg, regarding wording) as long as they did not change their meaning. In regard to the developed referral conversation elements, paediatric pain providers were asked to rate the importance of each element of the referral conversation on a five-point Likert scale (1, not at all important to 5, very important). This allowed us to extract the elements that were considered most important. In accordance with previous research,21 consensus criteria formulated a priori expressed by a combination of median and percentage scores. Median scores of ≥4 with a small IQR of ≤1 as an indicator of statistical dispersion combined with 75% responses of ≥4 were considered an indicator for consensus.22 23 Data were analysed separately for MD and PSY. Data from the PT, NP and OT were combined into a third group. This allowed for investigation of the consensus within each discipline and also explored possible discrepancies between groups of providers. Statements that did not meet the two consensus criteria in all groups were dismissed. Eighteen paediatric pain providers participated in Round 3 (n=9 MD, n=5 PSY, n=2 PT, n=1 OT, n=1 NP).

Description of the Delphi process (rounds 1–2)

Based on the responses to the first online survey (Round 1), we extracted 41 statements to characterise patients who were perceived as suitable to benefit from pain psychology in general (eg, ‘Patient who suffers from distress’) or graded exposure treatment more specifically (eg, ‘Patient who suffers from fear of pain’). An additional 25 statements were extracted to describe an ideal referral process (eg, ’Patients should be referred to pain psychology at the time of the chronic pain diagnosis’). To reflect the entire range of opinions expressed, different gradations were formulated (eg, ‘Patients are suitable with mild vs moderate vs severe functional impairments’). Other statements contradicted one another (eg, ‘A patients should be referred to pain psychology parallel to other medical approaches’ vs ‘A patient should be referred to pain psychology when other medical approaches were unsuccessful’). Thereby, some statements were deliberately presented in a pointed manner, to stimulate discussion in the expert panels.

A total of 58 statements were developed in the subsequent expert panels (Round 2). Fifteen statements characterised patient suitability for pain psychology in general, and nine statements described patient suitability to graded exposure treatment more specifically. Twenty-two statements formulated an ideal referral process to pain psychology. Twelve potential elements of a referral conversation were identified, and example phrases were formulated.

Results of the consensus rating (round 3)

Approximately one-third of the statements (20/58; 35%) reached consensus in all groups (see table 2) with most statements achieving consensus in only one (17/58; 29%) or two (13/58; 22%) groups. Eight statements (8/58; 14%) did not find consensus in any groups. The MD group agreed on most statements (41/58; 71%), followed by the PT, NP and OT group (34/58; 59%). The PSY group agreed with the fewest statements (28/58; 48%). Despite challenges in reaching consensus on statements about patient suitability (3/24; 13%), there did appear to be more agreement on the statements that formulated an ideal referral process (17/34; 50%). None of the statements describing patient suitability for graded exposure treatment were agreed upon in all groups. The entire list of statements together with indicators for both consensus criteria by each group can be found in online supplemental material S3. Some examples of how the essential elements of a referral conversation (see Aim 2 a with results presented in table 2) might be implemented are shown in figure 1. These sentences were extracted from the responses to the initial online survey and refined in the subsequent Delphi rounds. Because the experts agreed that the referring provider should respond to the patient’s individual situation, this is an example of how a referral conversation might proceed, not a script.

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Closing the referral gap to pain psychology

Drawing from the expertise of a multidisciplinary team of paediatric pain providers, the main contribution of this paper is to describe a practical referral action plan to pain psychology treatments. Paediatric pain providers agreed that the referral should be made verbally, as well as provided via written materials (eg, information materials, brochures or patient testimonials). They also agreed that the referring provider should understand the referral as an opportunity to explain a biopsychosocial conceptualisation of pain. When describing specific phrases that could be used in a typical referral conversation, paediatric pain providers’ responses were largely congruent with previously developed formulations for credible explanations for chronic non-traumatic knee pain24 and the role of emotions in physical symptoms.25 For example, experts have previously emphasised the importance of addressing the patient’s individual needs, approaching them with empathy and acknowledging their pain experience.24 25 In addition, other experts have similarly encouraged the use of open-ended questions to learn more about how the patient understands their symptoms and to allow the referring provider to meet the patient where they stand.25

During the expert panels, there were repeated discussions about resource problems, including provider shortages as well as distance and financial barriers. To overcome these barriers, providers in the REFER panel described referral to a treatment plan using a stepped care approach,26 challenging traditional treatment models where the delivery of pain psychology can instead take many forms with different components and delivery modes. The stepped care approach consists of different levels or steps of an intervention ranging, eg, from self-help ressources (level 1) to a single session or group interventions (level 2) and one-one-one sessions in an outpatient or inpatient setting. Tailored to symptom severity and patient needs, individuals can transition between levels as they progress in their recovery, with priority given to less resource-intensive interventions.19 The utility and implementation of a stepped care approach has also built momentum among pain researchers.19 27 For example, there are concrete suggestions on how different pain rehabilitation interventions could be tailored to patients’ individual needs based on a risk assessment tool.19 There has been continued effort to develop and evaluate more condensed formats to deliver pain psychology, eg, in the form of 1 day workshops28 or single session interventions.29 The COVID-19 pandemic has also led to a proliferation of asynchronous and virtual options, for which there exists empirical evidence, particularly at lower levels of stepped care with minimal health professional involvement.27

Altogether, paediatric pain providers have developed creative solutions to scale up pain psychology treatments and encourage referring providers to recommend pain psychology as a fundamental element in a pain management plan despite potential resource limitations. This plan may be implemented by upstream referring providers such as paediatricians, rheumatologists, orthopaedists, beyond just pain specialists. It should be noted, however, that this plan is based on clinician expert opinion only. The extent to which this plan can actually contribute to reducing the referral gap needs to be empirically verified by future research. Future research could also investige the extent to which the plan can be adapted to adult populations, where the dissemination of pain psychology is similarly difficult.30

Exploring reasons for the referral gap

Throughout the Delphi process, possible reasons for the referral gap to pain psychology treatments became evident. It seemed comparatively more difficult for paediatric pain providers to decide on specific characteristics that indicate suitability for pain psychology treatments. This is largely consistent with the contradictory findings on treatment moderators for pain psychology treatments in adults.31 Empirical studies of treatment moderators in paediatric populations are scarce,32 and few studies that exist, for example, in the context of an intensive pain rehabilitation programme with psychological elements, have had difficulty identifying consistent predictors of treatment response.33 Although it has not yet been possible to empirically determine which patients benefit most from pain psychology treatments, it is important to emphasise that, on average, patients can expect small to moderate improvements in their symptoms.1

Paediatric pain providers agreed that engagement in pain psychology requires openness on the part of the patient and family and readiness to take an active role in their recovery. This recommendation is consistent with a recently published pain management standard, which recommends a multimodal treatment approach including psychosocial elements.34 To choose the most appropriate psychosocial strategies and maximise the potential benefits, shared decision-making is essential, taking into account the needs, abilities and preferences of patients and their families.34 35 Similarly, previous research found readiness for change to be the most robust and modifiable baseline predictor of the response to an intensive pain rehabilitation programme.33 It should be noted critically, however, that while standardised tools exist to measure readiness for change such as the Pain Stages of Change Questionnaire,36 these measures are typically not included in general risk assessments that usually include physical and psychosocial risk factors.37 There is, therefore, a risk that the evaluation of motivation depends heavily on the perspective of the referring provider. At the same time, paediatric pain providers weakened both points regarding openness and readiness by agreeing that patients with unclear expectations and some resistance could still benefit from pain psychology. Indeed, structured interventions have been developed that aim to promote patient readiness and engagement prior to participation in an intensive pain rehabilitation programme with the idea to maximise the success of such programmes.38 Many patients and families are also unaware of how pain psychology could help them with their symptoms and an important task of the referring provider is to collaboratively build this understanding.9

Although other psychological or physical indicators of suitability for referral to pain psychology reached consensus within disciplines, none of these indicators was endorsed by all disciplines. It appears that while paediatric pain providers agreed on how patients should ideally be referred to pain psychology, they disagreed on who should be referred, possibly reflecting different models around case conceptualisation and treatment planning. As in previous research,39 concerns and uncertainty were particularly evident with exposure-based pain psychology reflected by the fact that none of the developed statements formulating criteria for patient suitability for graded exposure treatment reached consensus in all expert groups. The disagreement and uncertainty might exacerbate the referral gap. For example, referrals may depend more on the provider’s beliefs and perceptions than the patient presentation or symptoms, making referral decision-making more susceptible to bias. Contradictory messages or uncertainty on the part of treatment provider(s) could also lead to patient mistrust, inequitable pain care and possibly impact treatment engagement.

Limitations

During this Delphi process, we consulted highly experienced and well-trained pain specialists at a reputable US pain clinic. The opinions expressed, therefore, represent the perceptions of a single multidisciplinary team, and it is unclear to what extent they generalise to treatment providers working in other settings and healthcare systems. To draw more general and robust conclusions about an ideal referral process to pain psychology, it is essential that the study be replicated in other contexts and with other clinicians. For example, although resource deficits in the delivery of pain psychology were repeatedly discussed in the REFER panels, resource deficits are undoubtedly more profound in other communities and countries. In addition, the composition of various disciplines among the REFER experts was unbalanced and could be different in other settings. In many other settings, treatment providers may also not have specialised training in pain management or may rarely collaborate with colleagues from other disciplines, which could lead to even greater discrepancies and uncertainties in their perceptions. In particular, replication with upstream providers will be informative to better understand divergent opinions. For example, previous research identified that paediatricians often feel isolated in their decision-making without the support that is characteristic of a multidisciplinary team.40 Future research should, therefore, be built on existing work9 10 and continue to examine the attitudes and practices of upstream referring providers, such as paediatricians, rheumatologists, and orthopaedists who often have even less contact with pain psychology. While this study focused on the provider lens on the referral process, it is imperative that future research seeks to understand additional perspectives, such as the patient and caregiver lens. For example, their input would be extremely valuable in further understanding how referral conversations are perceived at the recipient end.