The word “patient” comes from the Latin pacient meaning “to suffer” or “to endure” (patient etymology). Some believe that this term should be changed to reflect a truer reflection of the value a patient can bring to understanding his/her own experience. In 2003, Ian Kennedy wrote that a patient is an expert “in his or her own experience, feelings, fears, hopes, and desires” (Kennedy, 2003). Increasingly, governmental health services, agencies, funding bodies and the like are taking a similar view and are beginning to involve patients as research partners to inform healthcare research. It is unique to the healthcare industry that the end consumers i.e., patients, have heretofore had little say in what drives their industry.
In 2017, the HS community embarked on a project involving patients and physicians, the Global Survey Of Impact and Healthcare Needs (Global VOICE), and the results of this project, involving participants from 27 affiliations from 14 countries spanning four continents, have recently been published (Garg et al., 2019) in the Journal of the American Academy of Dermatology (JAAD). After being hidden behind the journal’s paywall for several months, I am delighted to see that this has finally been published as an open access article, meaning that patient, carers, and other interested parties are now able to access this important publication. This is only fair as it is the patients’ voice, and patients (and other stakeholders who may not have a subscription to JAAD) should be allowed to access this study. In this post I will summarise the main findings from this project.
A questionnaire, comprising 50 questions, was designed by content experts and HS patients to capture details on patient demographics, disease impact on life, perspectives on disease diagnosis and care, disease-associated pain and symptoms, associated health conditions (comorbidities), and treatments received over the course of their disease.
Patient recruitment occurred between October 2017 and June 2018 from 27 institutes in 14 countries across four continents. Most of these institutes were HS referral centres. Over 1900 patients completed the survey; of these, 1299 met the inclusion criteria and were analysed further. Most respondents (> 90%) were from Europe (55%) and North America (38%).
The main findings from this patient survey can be summarised as follows:
- average time to HS diagnosis was 10.2 years; most patients (64%) visited a physician five or more times before receiving their HS diagnosis
- more than two in five (43%) reported that HS had an “extreme” impact on their quality of life
- approx. 15% were disabled
- one in eleven (9%) had contemplated suicide
- most (80%) reported at least one HS-associated medical condition (known as a ‘comorbidity’); of these, depression (36%) and anxiety (36%) were the most common
- almost half (46%) were dissatisfied or very dissatisfied with current treatments available to them
- some nine in ten (91%) selected pain as their primary symptom
Many of these findings deserve further comment. Firstly, in this digital age, where information can be rapidly exchanged and shared around the world at the click of a button, it is downright shameful that it is taking over 10 years on average for HS patients to receive their diagnosis. Similar to most other medical conditions, diagnostic delays can have serious implications for patient well-being. This delay is especially frustrating as HS diagnosis is a relatively simple procedure that can be performed in minutes (without the need for any diagnostic tests), once the treating physician knows what to look for, as described here. Bear in mind also that most of the patients were recruited from HS referral centres in countries where there are relatively high levels of knowledge and awareness of HS (13 of the 17 countries comprising the author list are in the top 25 wealthiest countries in the world, as measured by GDP, according to this list; in addition, most of these countries have HS researchers actively publishing research. I am assuming that HS awareness, will be higher here than in less-wealthier nations). I am left wondering just what is the true ‘global’ HS diagnostic delay from other countries (not included in the VOICE survey) where HS awareness may not be as high?
Over 40% of patients in this VOICE study reported that HS had “an extreme impact on their quality of life”. Adding further weight to this, some 15% of HS patients were classified as disabled and unable to work due to disease; in addition, almost 10% were unemployed due to HS. Both figures highlight just how serious HS can be. More than one in eleven HS patients admitted contemplating suicide, which is about as serious as it can get. In my 30+ years of living with HS, I have frequently encountered others dismiss the condition as being “just boils”. There is an increasing body of evidence showing that HS can have profound effects on many aspects of a patient’s life, such as the emotional, financial, professional, sexual, physical, and psychological, to name just some. Hopefully, the results of this study, coupled with the aforementioned growing body of evidence, will highlight just how serious an impact on patient quality-of-life HS can have.
Over 90% of patients selected pain as their primary symptom, which is startling, as (in my experience) HS pain is another aspect of the condition that is not treated accordingly. Illustrating this, none of the recently published (from 2015–2019) international guidelines for treating and managing HS give specific pain management recommendations (Hendricks et al., 2019). At the SHSA2019 conference, there was a session about HS pain management, which is a step in the right direction at least. However, as the VOICE results stress, pain is the most important issue for most HS patients and one that has not been adequately dealt with heretofore. Clearly, significant gaps remain in terms of pain management for HS patients.
The VOICE study also identified numerous unmet needs for HS patients, as follows:
- Diagnosis and Care: adressing lack of disease awareness, diagnostic delays, the cost and quality of care
- Symptoms: specifically the control of symptoms
- Life Impact: assessment of life impact, mental wellness
- Comorbid Conditions: research into, development of guidelines on, and establishment of interdisciplinary medical teams to treat HS-associated conditions
- Treatment: safe and effective treatments
Several mechanisms of actions for each of the foregoing unmet needs were proposed. My own hope in reading this paper is that the VOICE survey results will help inform dermatologists and other healthcare professionals, industry partners, and other HS stakeholders about future directions to channel HS research, treatment, and management resources.
Do you think that most of the unmet needs were highlighted? Are there other unmet needs you would like to have seen included or mentioned?
This is a very significant and welcome study and is the first peer-reviewed comprehensive publication involving as many HS patients to such an extent. The VOICE study highlights a number of critical findings that treating healthcare professionals, researchers, caregivers, and other interested parties need to be aware of.
Pain was reported as the most important symptom for the overwhelming majority of patients. As a fellow HS patient, I am not surprised at all by this finding. What is surprising is that it has taken this long for this aspect of living with HS to be recognised thus. Some other important findings from this study include the continued diagnostic delay experienced by many HS patients (longer than earlier studies, involving fewer patients, had reported, as discussed here), the lack of universally effective treatments, and stresses how potentially debilitating HS can be with a substantial proportion of patients disabled due to HS. Most patients reported associated illnesses including depression and/or anxiety. Furthermore, the VOICE survey emphasises that a multidisciplinary team may often be required to effectively manage this life-long condition including, but not limited to, dermatologists, surgeons, pain specialists, mental health, and behavioural health professionals. Many healthcare workers and researchers have been advocating such an approach for years but this is not often the case, as the study highlights.
The authors acknowledge that there were certain limitations to this study. For instance, the data was self-reported and may be prone to misinterpretation and recall bias i.e., inaccuracy in remembering specific events or the omission of certain details. The quesstionaire used in the survey has not been made available thus far, so the reader does not know the specifics of the 50 questions, how these were phrased, and so on; all these can influence how questions are answered. In addition, it is not stated in which language(s) the questionnaire was published and distributed to patients. Were the patients responding in their native or second/third languages? Such factors may also influence how questions are answered.
VOICE responses came from HS patients in just 14 countries, while there are 193 nations listed with the United Nations currently. Most VOICE survey respondents (91%) were from Europe and North America; collectivey, these regions account for about one eight of the world’s population; respondents from the rest of the world (with about seven eights of the world’s population totalled just 7% of VOICE. Despite these limitations, many lessons for all concerned parties are to be learned from this study.
Finally, the HS patients involved in VOICE identified several unmet needs that should be addressed by the HS community as a matter of urgency. Involving the HS patient in HS research policy is paramount if relevant advances in disease understanding, treatment, and care are to be met.
Garg, A., Neuren, E., Cha, D., Kirby, J.S., Ingram, J.R., Jemec, G.B.E., Esmann, S., Thorlacius, L., Villumsen, B., del Marmol, V., Nassif, A., Delage, M., Tzellos, T., Moseng, D., Grimstad, Ø., Naik, H., Micheletti, R., Guilbault, S., Miller, A.P., Hamzavi, I., van der Zee, H., Prens, E., Kappe, N., Ardon, C., Kirby, B., Hughes, R., Zouboulis, C., Nikolakis, G., Bechara, F.G., Matusiak, L., Szepietowski, J., Glowaczewska, A., Smith, S.D., Goldfarb, N., Daveluy, S., Avgoustou, C., Giamarellos-Bourboulis, E., Cohen, S., Soliman, Y., Brant, E.G., Akilov, O., Sayed, C., Tan, J., Alavi, A., Lowes, M.A., Pascual, J.C., Riad, H., Fisher, S., Cohen, A., Paek, S.Y., Resnik, B., Ju, Q., Wang, L., and Strunk, A. (2019) ‘Evaluating Patients’ Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project’, JAAD, [online], OPEN ACCESS, available at: doi: 10.1016/j.jaad.2019.06.1301, [accessed 28 Dec 2019].
Hendricks, A.J., Hsiao, J.L., Lowes, M.A., and Shi, V.T. (2019) ‘A Comparison of International Guidelines for Hidradenitis Suppurativa’, Dermatology, 1–16, [online], OPEN ACCESS, available at: doi: 10.1159/000503605, [accessed 30 Dec 2019].
Kennedy, I (2003) ‘Patients are experts in their own fields’, BMJ, 326, 1276, [online], OPEN ACCESS, available at: doi: 10.1136/bmj.326.7402.1276, [accessed 28 Dec 2019].