Background & Aims

Research has established a strong association between exposure to adverse childhood experiences (ACEs) and negative physical health outcomes such as chronic pain (1,2). However, there is no standardised, trauma-informed questionnaire available to assess ACEs in adults with chronic pain. In clinical contexts, patients report either not being asked about their experience of ACEs or it not being taking into account when offering services (3,4). In research, most ACE questionnaires currently used are not co-designed with people with lived experiences and hence are neither comprehensive nor sensitive to the potential for re-traumatising their respondents (5). Measuring and quantifying the impact of ACEs remains methodologically challenging, especially in terms of validity (6).
Therefore, the aim of the project was to develop a retrospective, self-report questionnaire that has high content validity and sensitivity in collaboration with people with lived experience of chronic pain (CPAG).

Methods

Discussions on what a retrospective, self-report ACE questionnaire should include were started with CPAG members based on the WHO ACE-IQ (7), leading to an “adjusted ACE-IQ”. Parallel to this, a systematic review identified any existing ACE questionnaires which had been psychometrically tested. To evaluate the content validity of the identified questionnaires, an evaluation tool was co-created with the CPAG and 6 clinicians to identify the features most important to the CPAG members. The evaluation tool was piloted before the identified questionnaires were rated by 2 independent CPAG members. Based on the ratings, two questionnaires, one with the most positive ratings and one with the least negative ratings were compared to the adjusted ACE-IQ. Their items were listed next to each other based on ACE categories they covered and CPAG members had the choice to add, delete or rephrase items. Based on those choices a final version of the CAPE ACEQ was collated.

Results

The “adjusted ACE-IQ” retained all items from the original ACE-IQ but the language was adjusted to be more trauma-informed. The systematic review identified 29 questionnaires of which 26 had full versions available for evaluation. The final evaluation tool had 18 items grouped into three sections: acceptability , scope and breath, design and administration. The Traumatic Experiences Checklist (TEC; 8) had the highest proportion of positive ratings (60% “good” ratings) across items, while the Trauma and Distress Scale (TADS; 9) received the least number of negative ratings (7%). Across all questionnaires the most amount of agreement was with the use of “easy language” (54%) and “justification for why the questions are asked” was most often rated negatively (69%). Cross-comparison of the items from TEC and TADS with the “adjusted ACE-IQ” led to a new questionnaire, the CAPE ACEQ, with 33 items covering abuse, neglect, household dysfunction, outside adversity, and collective violence.

Conclusions

Our approach identified that it is feasible to actively involve people with lived experience in the evaluation and design of questionnaires to ensure they not only assess what is relevant but also do so in an appropriate manner. This co-designed and systematic approach led to a comprehensive, sensitive, and trauma-informed ACE questionnaire relevant to adults with chronic pain. The next step will be to evaluate the psychometric qualities of the CAPE ACEQ. The availability of a standardised, trauma informed, co-designed questionnaire will be invaluable to further this growing field of research and gain a better understanding of the role ACEs play in the experience and treatment of chronic pain.

References

(1)Burke NN, Finn DP, McGuire BE, Roche M. Psychological stress in early life as a predisposing factor for the development of chronic pain: Clinical and preclinical evidence and neurobiological mechanisms. J Neurosci Res. 2017 Jun;95(6):1257-1270. doi: 10.1002/jnr.23802. Epub 2016 Jul 12. PMID: 27402412.
(2)Antoniou G, Lambourg E, Steele JD, Colvin LA. The effect of adverse childhood experiences on chronic pain and major depression in adulthood: a systematic review and meta-analysis. Br J Anaesth. 2023 Jun;130(6):729-746. doi: 10.1016/j.bja.2023.03.008. Epub 2023 Apr 21. PMID: 37087334; PMCID: PMC10251130.
(3)Stork BR, Akselberg NJ, Qin Y, Miller DC. Adverse Childhood Experiences (ACEs) and Community Physicians: What We’ve Learned. Perm J. 2020;24:19.099. doi: 10.7812/TPP/19.099. Epub 2020 Jan 24. PMID: 32069204; PMCID: PMC7021137.
(4)Strait J, Bolman T. Consideration of Personal Adverse Childhood Experiences during Implementation of Trauma-Informed Care Curriculum in Graduate Health Programs. Perm J. 2017;21:16-061. doi: 10.7812/TPP/16-061.
(5)Mendel WE, Sperlich M, Fava NM. “Is there anything else you would like me to know?”: Applying a trauma-informed approach to the administration of the adverse childhood experiences questionnaire. J Community Psychol. 2021 Jul;49(5):1079-1099. doi: 10.1002/jcop.22562.
(6)Holden GW, Gower T, Chmielewski M (2020). Chapter 9 – Methodological considerations in ACEs research. Editors: Asmundson GJG, Afifi TO. Adverse Childhood Experiences, Academic Press,161-182. https://doi.org/10.1016/B978-0-12-816065-7.00009-4.
(7)World Health Organisation. Adverse Childhood Experiences International Questionnaire (ACE-IQ). World Health Organisation; 2018. Available from: https://www.who.int/publications/m/item/adverse-childhood-experiences-international-questionnaire-(ace-iq). [Last accessed Jan 2024].
(8)Schumacher S, Martin-Soelch C, Rufer M, Pazhenkottil AP, Wirtz G, Fuhrhans C, Hindermann E, & Mueller-Pfeiffer C (2012). Psychometric characteristics of the German adaptation of the Traumatic Experiences Checklist (TEC). Psychological Trauma: Theory, Research, Practice, and Policy, 4(3), 338–346. https://doi.org/10.1037/a0024044
(9)Salokangas RKR, Schultze-Lutter F, Patterson P, Graf von Reventlow H, Heinimaa M, From T, Luutonen S, et al. (2016) Psychometric properties of the Trauma and Distress Scale, TADS, in an adult community sample in Finland, European Journal of Psychotraumatology, 7:1, DOI: 10.3402/ejpt.v7.30062

Presenting Author

Franziska Mosler

Poster Authors

Franziska Mosler

MSc

University of Dundee

Lead Author

Line Caes

University of Stirling

Lead Author

Aikaterini Christogianni

University of Dundee

Lead Author

Samuel Singleton

University of Dundee

Lead Author

Janine Rennie

BSc

University of Dundee

Lead Author

Timothy Hales

PhD

University of Dundee

Lead Author

Lesley Colvin

PhD

University of Dundee

Lead Author

Topics

  • Assessment and Diagnosis